Two Tiny Miralces, Born Seven Months Apart

Two years ago, newlyweds Valentina and Anthony Holguin were excited when they learned that Valentina was expecting a little girl. In just a few short months, it seemed like everything they had ever wished for was coming true.

But after a smooth and uneventful pregnancy, Valentina began experiencing extreme pain at the beginning of her third trimester.

“All of a sudden, I had these awful symptoms,” Valentina recalled. “My ribs felt like they were going to break and I had difficulty breathing. I was in so much pain.”

Valentina brought her concerns to her OB-GYN, but she was told that what she was experiencing was normal, especially toward the end of a pregnancy. Valentina decided to push through the pain and do her best to enjoy the time she had left before her daughter was born. At 32 weeks pregnant, she and her husband planned a trip over Memorial Day Weekend to attend her little sister’s high school graduation.

“We drove five and a half hours to get there and we had to stop every hour because I was in such excruciating pain,” Valentina said. “I didn’t know it at the time, but I was experiencing labor pains.”

The morning after they arrived, Valentina proudly watched as her little sister walked across the stage to accept her diploma. She bent down to take a picture to commemorate the moment, and just then, her water broke.

“I didn’t know what happened at first because it wasn’t a huge gush, but I could tell something was off,” Valentina said. “I went into the bathroom and saw that I had some bleeding, so I called my OB-GYN and they told me to go straight to the ER.”

There, the doctors confirmed that Valentina was in labor. Because she was only 32 weeks along, however, they did everything they could to stop her from delivering that day.

“They wanted me to hold out as long as possible to give my baby more time to grow,” Valentina said. “They admitted me to the hospital and I spent the weekend there on bedrest.”

That following Tuesday, a Maternal-Fetal Medicine specialist took Valentina for an ultrasound to check on the baby’s progress.

“I remember that the specialist was concerned because I was so swollen,” Valentina said. “I had so much amniotic fluid in my womb that the specialist said it must have felt like I was carrying twins.”

After the ultrasound, the specialist sat down with Valentina and told her some devastating news. Her baby girl had a condition called hydrops fetalis, also known as hydrops, which is characterized by a large amount of fluid build-up in the tissues and organs. The condition causes swelling and has a poor prognosis, with less than 50 percent of unborn babies surviving birth. In Valentina’s case, her baby’s lungs were filled with fluid.

“She was very straightforward with us and prepared us for the worst, saying that there was a very real chance that our baby may not make it,” Valentina said. “I tried to remain as positive as possible and my husband and I just hoped and prayed she would make it. I knew that my daughter needed me to be strong, and so I was only going to emit positive energy to her.”

The specialist told Valentina that she would need to be transferred to a hospital with a Level IV NICU before delivery, since her daughter would need specialized surgery immediately after birth. With the clock ticking, Valentina was airlifted to The Children’s Hospital of San Antonio (CHofSA).

The day after she arrived, Valentina went into active labor, and she was placed under the care of OB-GYN Dr. Jacqueline Battistelli, MD.

“Dr. Battistelli was an angel sent from heaven above,” Valentina said. “She really helped guide me through the process of labor.”

Before the delivery, Valentina was also paid a visit by neonatologist Dr. Sowmya Mohan, MD.

“Dr. Mohan gave me such reassurance. She told me her name, introduced me to her team, and told me that they were going to take care of me and my baby,” Valentina said. “She also explained how, after the delivery, they were going to try to let me see her for a moment, if possible, but that they would then have to take her into surgery immediately and put a shunt in her lungs to release the fluid. She gave me such clarity as to what was going to happen, which I really appreciated.”

Neonatologist Dr. Sowmya Mohan helped Valentina understand exactly what to expect when her baby was delivered at The Children’s Hospital of San Antonio.

Shortly thereafter, Dr. Battistelli delivered a baby girl, whom Valentina and her husband named Elena Diana.

“It was a beautiful delivery,” Valentina said. “We played worship music and after just an hour of pushing, my beautiful daughter was born.”

Valentina was able to see Elena for just a few seconds before she was rushed into surgery. About an hour after the delivery, Dr. Mohan walked into the room and told Valentina that her little girl was OK.

“They were able to put the shunt in and drain the fluid, and she told us that Elena was in the NICU and ready for us to see her,” Valentina said.

Valentina and Anthony were relieved beyond belief. Elena stayed in the NICU for 47 days until she went home with her parents. During that time, Valentina and her husband stayed in the hospital at the Ronald McDonald House, located just one floor above the NICU.

“I hardly left her bedside,” Valentina said. “I couldn’t hold her for the first 12 days of her life because of all the tubing and how fragile she was, but I made sure to give her all the love she needed.”

Baby Elena was finally in her mother Valentina’s arms. The baby girl needed surgery immediately following her birth to have a shunt placed in her lungs.

Although the experience was difficult and at times exhausting, Valentina said she was so grateful for everyone at The Children’s Hospital who supported her and took care of her daughter.

“Every single morning our resident, Dr. Shawnee Wallace, would come by Elena’s room and answer all of my questions,” Valentina said. “I am so grateful for doctors like her that listened to all of my concerns and allowed me to advocate for my daughter. We had such an amazing experience with everyone, and I felt like I was just surrounded by such good people.”

During Elena’s NICU stay, Valentina was especially impressed with first year resident Dr. Shawnee Wallace who eased her concerns by thoroughly answering all her questions.

Valentina and Anthony were thrilled to finally bring their daughter home. But then, something unexpected happened.

“A month later, I found out I was pregnant again,” Valentina said. “We were shocked but also so excited. And we thought everything was going to be so different this time. What happened with Elena was so rare.”

For a while, Valentina’s pregnancy progressed as expected. She was monitored closely by a Maternal-Fetal Medicine specialist because of her previous experience, and so far, there were no signs of any complications. But then, at just 25 weeks, Valentina went into labor.

“I started work that morning at 8:00 a.m., and then by 9:08 a.m., I was on the floor with insane contractions—I thought it was Braxton Hicks,” Valentina said. “I was working from home so I got into the bathtub and filled it with some warm water just trying to soothe myself, but I was in miserable pain. Then I went to the bathroom and that’s when I could feel my amniotic sac.”

Valentina was fully dilated.

“I called my husband to come home and he rushed me to the nearest hospital, we didn’t have time to go anywhere else,” Valentina said.

Because her baby was breech, doctors performed an emergency C-section within an hour of her arrival at the hospital, and her second baby girl, due April 27, was born on January 13, 2022.

“She was so tiny, a micro-preemie, weighing just 1 pound, 13 ounces,” Valentina said.

Her daughter, Lucia Valentina, would need the highest level of NICU care, so Valentina asked for her to be transferred to The Children’s Hospital of San Antonio.

“It was so scary because of how tiny she was,” Valentina said. “At that point, I had already lived a NICU experience and I had made friends with other parents who had shared their experiences with me, both the good and also the really tragic and sad. So, this time it just felt more real.”

At CHofSA, Valentina learned that her daughter had a grade three bilateral brain bleed, as well as a patent ductus arteriosus (PDA) which is an opening between the two major blood vessels leading from the heart. Lucia was monitored closely by her primary doctor, Dr. Maria Pierce, a board-certified Perinatal-Neonatal Medicine physician at CHofSA. Both conditions, common among babies born as early as Lucia, were monitored closely and, thankfully, resolved with time.

Valentina wanted to make sure her daughter Lucia had the same level of care that Elena had. Again, she turned to The Children’s Hospital of San Antonio. This time Dr. Maria Pierce, Medical Director of the NICU, provided outstanding care to Lucia for more than 100 days.

“The doctors were so communicative with me and always let me know what was going on with her every single day,” Valentina said. “Dr. Mohan, who we had grown close to on our first NICU stay, never failed to come by and ask how we were doing, as well as answer any questions we had. She had a special way of explaining everything to us.”

The Holguins found themselves back in the NICU at The Children’s Hospital of San Antonio with their second daughter Lucia who was born prematurely. They returned only a few months after Elena was discharged from the NICU. The baby girls were born just seven months apart.

Lucia stayed in the NICU for 101 days. “This time was harder because I couldn’t live with her in the hospital since we had another baby at home,” Valentina said. “But it was comforting to know that she was in good hands with her nurses. It was a whole process learning to let go and trust others to look after her, but I know the staff there loved her so much. She had a couple of nurses that I got to know well during our NICU stay, and when Lucia was in their care, I could sleep peacefully at night. Amy Parker, Jesse Battleson, Dayzee Treiber, Coral Nolan and Kristin Joyner are some of those amazing nurses that I was confident would look after her with such genuine love and care.”

Despite two high-risk pregnancies, the Holguins welcomed two baby girls into their family during a short span of seven months. Here the couple is shown with daughters Lucia and Elena.

Today, both girls are home, surrounded by their loving parents and doting extended family. Although Lucia still has some hurdles in her growth and development—she is being treated for retinopathy of prematurity, an eye abnormality common in premature infants—she is making strides with a bright future ahead.

“We are just so in love with these amazing little babies,” Valentina said. “I still can’t believe I have two little miracles, and I am eternally grateful to The Children’s Hospital of San Antonio and its outstanding staff for taking care of my girls so well.”

To learn more about the Level IV NICU at The Children’s Hospital of San Antonio, visit https://www.christushealth.org/get-care/services-specialties/womens-services/neonatal-intensive-care.

A Rainbow After Many Storms

Every time Stephanie Rodriguez and her husband, JC, lay eyes on their 6-month-old daughter, Vida Rose, they can’t help but call her their miracle rainbow baby. The couple never imagined having another child would be a struggle filled with lots of heartache. After two miscarriages and a chemical pregnancy,* Stephanie wasn’t sure if a viable pregnancy was even possible for her.

“When I had my son, he was a total surprise,” said Stephanie. “I didn’t have any complications carrying him to term. Then, when he turned 4, my husband and I wanted to have a second baby so our son could have a sibling. It took me nine months to get pregnant. At our baby’s 24-week anatomy scan, I found out our daughter, Ruby Rose, had passed at 18 weeks. It was when COVID first started. My appointments were spaced out because my doctor reduced our visits during COVID. When I heard the words, ‘There is no heartbeat,’ I never thought that this would happen to me. Because literally, no one in my family that I know of – my mother, grandma, my aunts, the women in my family – had a miscarriage. I hadn’t felt the baby move because I was overweight. I thought maybe I’m just too big to feel her move. The loss was so painful for me.”

Dr. Emma Rodriguez provided preconception counseling to help Stephanie have a healthy pregnancy.

After her miscarriage, Stephanie began seeing Dr. Emma Rodriguez, a high-risk maternal fetal medicine physician at The Children’s Hospital of San Antonio and Dr. Mary Stokes, an OB-GYN with CHRISTUS Trinity Clinic. Because she had a prior history of miscarriage, Stephanie had preconception counseling with Drs. Rodriguez and Stokes to plan for a future pregnancy. Struggling with the devastating loss of her daughter, Stephanie wanted to get pregnant right away because she felt a nagging feeling inside of her – she had a baby one day and the next day it was taken away from her. In July 2020, Stephanie was pregnant again.

Dr. Mary Stokes with CHRISTUS Trinity Clinic, was Stephanie’s OB-GYN as she continued to try and have for a second baby.

“I was happy to be pregnant, but I was nervous at the same time,” said Stephanie. “I didn’t want this pregnancy to be like the last one. So, my husband and I were cautiously optimistic. When I came in for a six-week ultrasound, my doctor saw a fetal pole (first visible sign of a developing embryo) but there wasn’t a heartbeat. We went week by week to see – maybe the baby is too small. Every week when we went in for an ultrasound, there was no heartbeat. When I was nine weeks along, I had a D&C.** A few months later, I had a chemical pregnancy in February 2021. As much as I wanted another baby, I cried because I just felt like a failure over and over again.”

Stephanie was cautiously optimistic about being pregnant again after several miscarriages. She is grateful to the doctors at The Children’s Hospital of San Antonio who were there for her every step of the way.

Then, in April 2021, Stephanie found out she was pregnant with Vida Rose. But this time, she didn’t tell her husband the baby news just yet. She waited until she had her blood drawn at her OB-GYN’s office to confirm the faint pink lines she saw on her pregnancy test were indeed true.

“When the time came for me to share the baby news with my husband, I wanted to make it extra special for him,” said Stephanie. “I had a box that I made, and I ordered a onesie with a rainbow on it. I bought some little baby shoes and put them in the box along with the positive pregnancy test. When he opened the box, he was happy because he knew how sad I was with our losses. My mom was thrilled to hear the news. The rest of our family was hoping for the best for us.”

Due to her history of recurrent pregnancy loss and testing indicating she was at increased risk for clotting, Dr. Rodriguez prescribed Lovenox, a blood thinning medication which was taken throughout her pregnancy. When Stephanie was six weeks pregnant, she had her first ultrasound. Baby Vida Rose’s measurements were spot on. As her first and second trimesters passed by, everything was going smoothly. Stephanie and her baby were doing well.

“Every time I went in for an ultrasound, I could see my baby’s heartbeat,” said Stephanie. “When I could see her on the doppler at home and see her heartbeat, it made me feel less nervous. I’d check on her heartbeat often. Is she still alive? Is there a heartbeat? I kept thinking those things throughout my pregnancy. I could not stand to go through the loss of another baby. I wasn’t able to relax until Vida Rose was in my arms. As the days got closer to my induction, I started getting more nervous. I was like, I am going to have two babies now, a 4-year-old and now a newborn.”

The Rodriguez family was thrilled to welcome Vida Rose when she arrived in early January.

On January 3, 2022, when Stephanie was 39 weeks along, she and her husband, JC, welcomed their daughter, Vida Rose, at The Children’s Hospital. She weighed 7 pounds, 3 ounces. Stephanie was excited to finally see her baby’s face because every time she had a 3-D ultrasound, Vida would always hide her face. She thought maybe her daughter wanted her debut to be a big surprise.

“When the nurses put Vida in my arms for the first time, it was just like we were meant for each other,” said Stephanie. “Vida is my miracle baby for sure. She is now a happy, healthy 6-month-old who loves to eat. She doesn’t want me to put her down. She’s like a little koala holding on to me. I wouldn’t have it any other way. While this was a difficult journey, I had a wonderful support system that helped me through it. My husband was definitely my rock, and my entire family was supportive. I am also thankful to Dr. Rodriguez and Dr. Stokes for being with me on this journey. They were rooting for me and were always there to answer my questions and concerns. They both knew my history so they did everything they could to ensure a successful pregnancy.”

The Rodriguez family considers Vida Rose a miracle baby after they experienced multiple miscarriages.

The Children’s Hospital of San Antonio has an entire team of maternal fetal medicine specialists caring for women experiencing high-risk pregnancies. For more information about the Centers for Maternal and Fetal Medicine, visit our website:

Maternal Fetal Medicine | San Antonio, TX | Children’s Hospital (christushealth.org)

*A chemical pregnancy is an early miscarriage that happens in the first five weeks of pregnancy.

**D&C stands for dilation and curettage, a procedure in which a doctor uses a spoon-shaped instrument to scrape the lining of the uterus to remove tissue.

Our little heart warrior: Our story of hope and perseverance

Just before Valentine’s Day 2021, Jennifer and Alejandro Cantu, already parents to 3-year-old Camila and 2-year-old Lyla, were thrilled when they found out their family would be growing once again.

“I was surprised and excited,” said Jennifer. “I waited the following day to tell my husband in a cute little way. I bought a bunch of Valentine’s Day knickknacks – five gum balls, five little hearts, 5 little bubbles – five of everything, and put it in a basket along with a bundle of wrapped up positive pregnancy tests. I wrote on the heart, “What do you think of the number five?” My husband was puzzled at first and then he finally got it. We were thrilled to find out that we were having another baby sooner than expected.”

Unlike her first two pregnancies, Jennifer was extremely sick during this one – the constant morning sickness just wouldn’t go away. She felt nauseated all the time and super tired. As much as she loved chocolate, she couldn’t eat sweets because it would make her feel sick, which was strange to her.

Jennifer and Alejandro excitedly awaited the arrival of their third child they would name Jax. Jennifer was diagnosed with gestational diabetes and she soon learned her son would be born with a heart defect.

“I knew something was off,” said Jennifer. “I could tell my body wasn’t responding normally. Every time I would eat something sweet, I would get sick. It wasn’t like pregnancy sick. It was more jittery, like I was going to pass out because my sugar was off. So, my maternal fetal medicine (MFM) physician in Georgetown, north of Austin, gave me a two-hour gestational diabetes test and I failed it. Since I was diagnosed with gestational diabetes, I had to adjust to a strict diet. I wasn’t allowed to eat sweets. I couldn’t drink any juice, just water. I ate a lot of chicken, vegetables and eggs, and I had to check my sugars three times a day after every meal. That was challenging as well because pricking your finger hurts when you do it wrong.”

As Jennifer was dealing with pregnancy challenges of her own, it wasn’t until she was 28 weeks along that she found out her baby boy had a ventricular septal defect (VSD), a type of congenital heart defect where a hole forms in the wall between the ventricles, the main pumping chambers of the heart. Her MFM physician wasn’t too concerned about it at the time, and told Jennifer that after her son’s birth, he would need another echocardiogram to check on his heart condition to see if he needed interventions.

“After we relocated our family to San Antonio, I began seeing Dr. Angela Akonye, an OB-GYN at the Women’s Center in Westover Hills,” said Jennifer. “I updated her on my gestational diabetes diagnosis and that my son had a small hole in his heart. Dr. Akonye referred me to Dr. James Hill,  an Maternal Fetal Medicine physician at The Children’s Hospital of San Antonio (CHofSA). I was about 30 weeks when my husband and I saw Dr. Hill for the first time. He gave us such a warm welcome. He was knowledgeable and made us feel comfortable. He just gave off a really good vibe. No question was a dumb question for him. He gave us that platform to talk and he just listened to us and answered any questions or concerns that we had.”

Jennifer and Alejandro were impressed by the care and attention they received from Maternal Fetal Medicine Specialist Dr. James Hill. “He just listened to us and answered any questions or concerns we had,” Jennifer said.

Then, Dr. Hill referred Jennifer to The Children’s Hospital to have a fetal echocardiogram. He wanted to make sure nothing else was wrong with her baby’s heart. After the echocardiogram, she met with Dr. Chetan Sharma, who would become her son’s pediatric cardiologist. At the time, Dr. Sharma noticed a small hole in his heart and was concerned about a possible narrowing of the aortic arch so he suggested Jennifer deliver at CHofSA.

“I met with Dr. Hill and told him everything about my son’s echocardiogram,” said Jennifer. “Even though the test showed my son had a hole in his heart, Dr. Hill was adamant about us delivering at Children’s Hospital because they had a great team in place. I will never forget what he told me that still resonates with me today. He said, ‘After you deliver, make sure you get an echo done ASAP to rule out any other problems. Do not leave the hospital until you get it. Your baby needs that test.’”

A few days leading up to the birth of their son, Jennifer embraced the last couple of days being pregnant and spent quality time with her husband and their two girls. She soaked in that little bit of time she had before their newest addition joined their family. This third pregnancy was bittersweet for the couple since this was their final pregnancy. This would be the last time Jennifer would experience giving birth to another baby and the emotions that come along with meeting that precious newborn for the first time.  

“I was already 3 centimeters dilated by the time I got to the hospital for my induction around 9 p.m.,” said Jennifer. “I didn’t get Pitocin until the next morning because they wanted to wait to see if my body would progress on its own. An hour or two after I got an epidural, I was ready to push. I pushed for about two minutes, and not long after that, my husband and I welcomed our beautiful son, Jax, on October 5, 2021. He was almost 8 pounds and he cried immediately when he was born. It was a surreal moment for us. This was my last baby, so I experienced a mixture of emotions that day. I was also very anxious too. I knew Jax had a hole in his heart and that he needed to get an echocardiogram right away. I recalled what Dr. Hill told me over and over again – do not leave the hospital until he gets that test.”

Jennifer experienced a range of emotions when she gave birth to her son Jax, knowing he would need additional tests to determine the extent of his heart defect.

The next morning, the cardiology team entered Jennifer’s room to perform an echocardiogram, or an ultrasound of Jax’s heart.  They started the echocardiogram, and when Jennifer woke up from her nap, she noticed they were still in the room. When they finally left, Jennifer and her husband grew concerned that the echo took longer than usual. They began wondering if something else was wrong with their son’s heart. Moments later, a swarm of doctors came in the room. The cardiologist on call told them Jax had a hole in his heart called a PDA, or Patent Ductus Arteriosus, which would mostly likely close on its own. A PDA is diagnosed when the ductus arteriosus, or the opening between the aorta (the artery that carries oxygen-rich blood to the body) and the pulmonary artery (the artery that carries oxygen-poor blood to the lungs) does not close as it should. Jax also had two other heart defects, a bicuspid valve and a Coarctation of the aorta. The last diagnosis is what concerned the doctors the most.

“The doctor drew us a diagram of Jax’s heart,” said Jennifer. “He said he had a narrowing of the aorta, which forces the heart to pump harder to get blood through the aorta and to the rest of the body. He said Jax had a PDA that was open. If that closes, he wasn’t going to have enough blood pumping to his lower organs. So, his organs were going to start to fail – his liver, kidneys, everything would shut down. It was less than 24 hours that I had my baby in my arms and all this stuff started to hit me – one thing after another. I started to bawl my eyes out. I was in shock and was terrified. The cardiologist told me this wasn’t an affirmative diagnosis because they were still waiting for the PDA to close to see what would happen to the narrowing of the aorta. They did another echo later that day. The PDA closed, and it revealed that he had coarcation of the aorta. When the doctors left, I just kept thinking about Dr. Hill and what he told me early on in my pregnancy – and I am glad I listened to him. If my baby didn’t get that test at that point in time, he would have died. My son is literally here today because of Dr. Hill.”

Jax needed heart surgery. But until he had his surgery, his cardiology team wanted to keep the PDA open for a few more days. They wanted Jax to be at least a week old before he had surgery. While his nurses took care of him in the NICU, Jax was given medication to keep the PDA open to allow blood flow to his body beyond the coarctation. Jennifer and her husband met with Dr. Victor Bautista-Hernandez, a cardiothoracic surgeon at The Children’s Hospital, who explained how he would repair Jax’s defect.

Dr. Victor Bautista-Hernandez, a cardiothoracic surgery, helped explain Jax’s condition to Jennifer and Alejandro. Dr. Bautista eventually performed three separate operations to help Jax’s heart function normally.

“Newborns who have extensive narrowing in the aorta usually need surgery soon after birth,” said Dr. Bautista. “To repair coarctation surgically, clamps are placed on the aorta to quickly interrupt blood flow to downstream areas. In Jax’s case, we performed a resection with anastomosis where we removed the narrowed segment of the aorta and reconnected the two ends together. When we did the first repair, I didn’t like what I was seeing after we closed him up and did an echocardiogram. We had to redo the repair twice before I was satisfied with the repair surgery. Jax did well during the procedure. With this repair, we were able to open the narrowed aorta to allow enough blood to flow throughout his body.”

Dr. Chetan Sharma, a pediatric cardiologist at The Children’s Hospital of San Antonio, continues to monitor Jax’s condition to ensure his heart keeps working as it should.

After his surgery, Jax was swollen, heavily sedated and hooked up to many different machines, as he spent one week in the PICU recovering before he could go home. Now, 9 months old, Jax is doing great. Jennifer says everything is checking out well for him developmental wise. While he has a very slight narrowing in his aorta, his blood pressure medication is maintaining it, so it doesn’t close. He sees his cardiologist, Dr. Sharma, every month for follow-up visits. He won’t need another surgery, but he may need a ballooning or a stent procedure to expand his artery down the road if the narrowing returns. He still has a bicuspid valve, but his doctors are monitoring it closely. He doesn’t need additional surgery at this time.

Jennifer believes Dr. James Hills’ advice regarding an immediate ultrasound of Jax’s heart may have saved her baby’s life.

“I am so grateful to all of the doctors who took great care of our son,” said Jennifer. “I had a wonderful experience at Children’s Hospital.  First of all, I want to thank my MFM physician, Dr. Hill. I owe my son’s life to this man. If my son didn’t get that echocardiogram soon after he was born, the situation would have been much different. Dr. Bautista was an amazing surgeon. It’s hard working with little patients. You don’t know what to expect. They are very small and vulnerable, but he was the miracle worker. His nurse practitioner, Amanda, was awesome and updated me on everything going on in the OR. She was reassuring us and providing us with detailed information and was always there when we needed her. We are just happy to have Jax with us. He is a living and breathing miracle. He completes our family.”

The Heart Center at The Children’s Hospital of San Antonio provides comprehensive care to children with rare to complex heart problems. To learn more about our Heart Center, please visit:

Pediatric Cardiology & Heart Care | CHRISTUS Health

To learn more about diagnosing and treating gestational diabetes, please read: https://chofsablog.org/2021/09/29/youve-been-diagnosed-with-gestational-diabetes-now-what/

Heart to Heart: The Gift of Motherhood

For Tierany Narro, there’s nothing quite like celebrating motherhood for the first time. Two months ago, she welcomed her beautiful daughter, Paityn, into the world. From the moment their eyes met, Tierany fell in love with her instantly. Just as she imagined, their mother-daughter bond grew stronger than ever.

“My first day as a mother was everything I could have wanted and more,” said Tierany. “My fiancé, Byron, and I celebrated this special milestone as we bonded with our new baby. To be able to care for another life other than my own, and to love this cute little human that we created together, is such an amazing and indescribable feeling. Our daughter is the most precious gift that we could have ever asked for.”

For the longest time, Tierany wasn’t sure if she could have a baby. When she was 11 years old, she was diagnosed with Long QT syndrome (LQTS), a rare heart rhythm disorder. Her heart’s electrical system took longer to recharge causing her to have rapid and chaotic heartbeats. Even the slightest physical activity or emotional excitement could trigger an episode. LQTS causes fainting and seizures, and if left untreated, it can lead to sudden cardiac arrest. Tierany didn’t know she had it until her first episode.

“I was racing my brother and cousin on the trail,” recalled Tierany. “The only thing that I remember was I could only breathe in. I could not breathe out. I was rushed to the hospital and when doctors did an EKG on me, I found out that I had LQTS. It was a crazy experience. As a kid, you want to ride rollercoasters, get spooked at haunted houses, play sports and I wasn’t allowed to do any of those things. The only sport I was allowed to play was golf. I had to avoid anything that raised my blood pressure and heart rate. I was put on beta blockers to slow my heart rate down which I still take today. When I found out I was pregnant, my doctors treated my pregnancy as if it was high risk due to my heart issue. They were concerned how my heart would handle the delivery.”

Tierany wasn’t sure she could even get pregnancy and have a baby. Once she found out she was goign to have a baby, her OB-GYN referred her to Dr. James Hill, a maternal-fetal medicine specialist, to closely monitor her high-risk pregnancy.

Throughout her pregnancy, Tierany began seeing OB-GYN Dr. George Cajas, who referred her to Dr. James Hill, a high-risk maternal-fetal medicine specialist at The Children’s Hospital of San Antonio. She saw Dr. Hill once a month for the first trimester. Then, halfway through her second trimester, she had weekly visits with Dr. Hill since she resumed taking her medication for LQTS. Since beta blockers can impact the growth of the baby, Dr. Hill checked Paityn’s growth curve every three weeks. Paityn was growing at a normal pace, but her growth lagged during the third trimester. Her growth would be a few days behind and then a week behind – but it was only in certain parts of her body. Her little belly was measuring the furthest behind. Paityn was doing fine. She was just on her own little growth curve.

Maternal and Fetal Medicine Specialist Dr. James Hill helps expectant moms manage their high-risk pregnancies. Dr. Hill ran a number of tests during Tierany’s high-risk pregnancy to make sure her heart could withstand the stress of labor.

“My excitement grew as I neared the end of my pregnancy,” said Tierany. “During my last trimester, Dr. Hill performed nonstress tests on my daughter to monitor her heart rate and to see if I had contractions at the same time. If I had contractions, the nonstress test would let Dr. Hill know how well Paityn was tolerating those contractions. When I started having Braxton Hicks, I met every week with Dr. Cajas and Dr. Hill. They did nonstress tests on my baby twice a week. They wanted to space them apart so if I was having contractions, they could see it. At every appointment, they talked to me about my birth plan.”

The plan was to deliver Paityn at 40 weeks. Dr. Hill explained to Tierany the risks and benefits with trying to deliver naturally versus a Cesarean section due to her heart condition. The goal was to put the least amount of stress on her heart, but it was up to Tierany to make that final decision. A few days before Tierany was admitted to the hospital, Dr. Hill compiled detailed notes on what Tierany could and couldn’t do. As much as possible, he did not want her to feel any contractions or do anything that would increase her blood pressure and accelerate her heart rate especially leading up to the birth of her daughter.

When Tierany arrived at CHRISTUS Santa Rosa Hospital – Westover Hills on March 27, 2022, the nurses started her on a Foley balloon, a catheter-like device that helps the cervix dilate when labor needs to be induced. Her cervix dilated to 3.5 centimeters before she began feeling light cramping and contractions. The next morning, Tierany had an epidural to help speed up her progress. She was on a continuous slow and light drip of Pitocin to avoid hyperstimulation because of her heart condition. Her nurses did not want her to feel the contractions. Later that evening, when Tierany had not progressed, Dr. Cajas broke her water.

“The slow drip of Pitocin helped me dilate but it wasn’t doing too much,” said Tierany. “I didn’t realize that once my water broke, my contractions got very serious. I had an IV in my left arm that had Pitocin, magnesium and other fluids. The magnesium helped with my heart. My doctors also gave me potassium pills for my heart, and I was still taking my beta blocker medications. Then, around four in the morning, I started feeling intense contractions. I clicked the epidural button to draw more medicine, but it was almost empty. I called my nurse, and she stepped in to help. Later that morning when Dr. Cajas checked on me to see my progress, he could feel my baby’s head. I was super excited and so ready to finally meet her.”

Since Tierany’s pregnancy was high risk, her doctors planned everything out in case something happened during delivery. Tierany was hooked up to an EKG telemonitor to monitor her heart rate throughout the birth process. They also had a crash cart ready just in case she had to be resuscitated. Luckily, there were no complications. On March 29, 2022, at 10:09 a.m., after three pushes, Tierany and her fiancé, Byron, welcomed their precious baby daughter, Paityn, into the world. She weighed 6 pounds and 15 ounces.

“I got so emotional when I saw Paityn for the first time,” Tierany. “I got to see her little face looking right at me. We didn’t see her face but one time during my pregnancy because she always covered herself. Our daughter is two months old now, and she is nothing short of a miracle. She has a such a little attitude and a big personality. She is a happy baby, but she will give you mean faces when she demands something. She loves to be held all the time. She loves to eat. She eats four ounces every two hours. And she just started sleeping through the night. When she wakes up, she’ll scream at the top of her lungs like mommy, please feed me. She’s the cutest thing ever. While there were risks involved with me being pregnant, I was blessed with wonderful, caring doctors. Dr. Cajas and Dr. Hill were both amazing and followed my pregnancy closely. The nurses were great. They understood me and validated my concerns. They were always there whenever I needed them. They cared for me not just as a patient, but as a human being.”

Tierany says 2-month-old Paityn has a big personality. She’s grateful to the doctors who cared for her and for those who will monitor Paityn’s condition throughout her childhood.

After her daughter’s birth, Tierany had Paityn tested for LQTS since this heart problem can be genetically passed on. Tierany got the LQTS chromosome from her father. After taking a buccal swab test, the results came back two weeks later. Just like Tierany, Paityn also has the same heart condition. She’ll have regular visits with her cardiologist at The Children’s Hospital of San Antonio, Dr. Arpit Agrawal, throughout her life – but just like her mother, she can still enjoy life to the fullest.

Because Paityn was diagnosed with LQTS through genetic testing, Pediatric Cardiologist Dr. Arpit Agrawal will now monitor her heart as she grows.

“I am glad we did the buccal swab test and caught it when she was a newborn,” said Tierany. “Most kids find out they have it much later when they get their first episode, since there are no symptoms early on. While I didn’t want her to have LQTS, I know my baby can still live a healthy, vivacious life just like me.” To learn more about the Centers for Maternal and Fetal Care at The Children’s Hospital of San Antonio and how we care for high-risk pregnancies, please visit:  Maternal Fetal Medicine | San Antonio, TX | Children’s Hospital (christushealth.org)

Three Reasons I Needed a Children’s Hospital

Meg Hawley, Social Media Specialist, The Children’s Hospital of San Antonio

I did not know I needed a children’s hospital. Sure, I work for a children’s hospital, but my family did not need one – or did we? My daughter, Mary Cameron, just needed tubes in her ears to alleviate the chronic and painful ear infections she was experiencing. It’s a simple procedure that takes about 10 minutes.

Did I ever think I would need a children’s hospital? My baby was not born with a complex heart condition; my teenager was not diagnosed with a rare disorder; and I didn’t have a high-risk pregnancy that would require the most advanced care for me or my baby.

It turns out, we did indeed need a children’s hospital. Children, all children, need a children’s hospital. You could even argue that parents need one just as much as the kids do.

A child life specialist introduces Mary Cameron to a mask like the one that would be used to put her to sleep before her ear tube surgery. Child life specialists are available in the pre-op area to help children experience less anxiety leading up to their surgery.

I was telling a friend about Mary Cameron’s ear tube procedure and how everything went so smoothly. Her son would soon need the same operation and she wanted to know what to expect. I immediately realized there were three things that made the process less scary and gave me comfort as a mom: A pediatric anesthesiologist, a visit with a Child Life Specialist to practice with the sedation mask, and a little car she got to “drive” into the operating room so that she was completely distracted and unconcerned when I had to kiss her head and say, “See you later.”

As I talked with my friend, I realized she may not have access to these child-friendly features in the town where she lives. These are very specific attributes and they don’t exist everywhere. Adult hospitals and surgery centers may not have these services but you can find them all in a children’s hospital. I quickly realized, yes, my family actually needed a children’s hospital.

@thechildrenshospitalsa

Yes, the cars some of our patients drive in to surgery are ADORABLE and fun but they serve a purpose. Play is a universal language and our #ChildLifeSpecialist and #ornurse use tools like these SWEET RIDES to help them feel a little more normal when headed off to a procedure! #childrenshospital #sanantonio #surgery #toddlersoftiktok

♬ original sound – dinda_smr – dinda_smr

A nurse pushed Mary Cameron down the hallway leading to the operating room. Driving the little pink car to the OR was the highlight of her day at the hospital. Follow us on TikTok for more fun videos featuring cute kids, amazing doctors, and talented Associates!

The Children’s Hospital of San Antonio is “the city’s first and only free-standing children’s hospital.” As part of the CHRISTUS communications team, I have written that phrase more than a few hundred times. While I sat in recovery with my loopy 2-year-old, coming out of anesthesia, enjoying her post-op Popsicle, I realized that I may never associate what that truly means as a mere marketing catch phrase. From now on, it will feel like a promise. A promise to me, Mary Cameron, and the rest of San Antonio that children always come first within this building and that’s why a children’s hospital is essential in every community.

Everything for our children.

Blessed Beyond Measure

When Amarachi Ogu found out she was pregnant, she was overjoyed about becoming a mother again. She and her husband, David, are parents to 2-year-old Adaeze who keeps them quite busy. But the couple always wanted a little sibling for their daughter. This time, they were expecting a baby boy.

“We were excited to become parents again,” said Amarachi. “I remember the day when I found out I was pregnant. I was feeling a little dizzy but that wasn’t unusual because I felt the same way when I was pregnant with my daughter. Since I had been bleeding, I thought the chances of being pregnant were slim, but I decided to buy a few home pregnancy tests anyway. When I took the first test, it came back positive. Then I took a second test, and it was positive again. I was surprised and confused. When I saw my OB-GYN, she confirmed I was six weeks pregnant. She told me I was spotting, and it wasn’t a period.”

Amarachi and David were excited to welcome a baby boy to their family and give 2-year-old Adaeze a sibling.

Since Amarachi had a history of placenta previa with her first pregnancy, and she was spotting, her OB-GYN, Dr. Angela Akonye, suggested she take a small dose of aspirin daily throughout her pregnancy. Since she was 40 years old – pregnant women over the age of 35 are considered high risk due to their advanced maternal age – Dr. Akonye referred Amarachi to Dr. James Hill, a Maternal-Fetal Medicine physician with The Children’s Hospital of San Antonio who monitored her pregnancy and her baby closely.

Dr. James Hill specializes in maternal-fetal medicine. He closely monitored Amarachi’s high-risk pregnancy.

“My pregnancy was extremely difficult, especially during the first 14 weeks,” said Amarachi. “I had so many unpleasant symptoms happening all at once – I had nausea, vomiting, dizziness and extreme fatigue. I was tired all the time. I had to miss two weeks of work because I was feeling sick. The biggest challenge was keeping food down. The only thing I was able to eat was white rice and crackers. For some reason, whenever I am pregnant, I have a hard time drinking water. The whole relationship with water was tough for me at the time. My OB-GYN prescribed nausea pills, which helped me a little bit.”

Despite the symptoms that came with her pregnancy, the couple’s son was doing well. His weekly ultrasounds showed that he was growing and developing like he should. Then, when Amarachi was 20 weeks along, she had incompetent cervix (also known as cervical insufficiency), where the cervix begins to thin out too early in pregnancy, which can lead to miscarriage, preterm labor and premature birth.

Amarachi Ogu turned to Dr. James Hill to help manage her high-risk pregnancy. At 20-weeks into her pregnancy, she was diagnosed as having an incompetent cervix.

“When I met with Dr. Hill, he was concerned about my cervix, and he told me we had to do something quickly before it complicated the pregnancy,” said Amarachi. “He said there were two treatment options to consider. He could put a stitch in my cervix to reinforce it or he could give me vaginal progesterone to reduce the risk of pregnancy loss or premature labor. I was concerned, but I told him please give me a week. I am a person of faith. Let me go home, talk to my husband, and pray on it. He said, “I’ll give you a week but if you come back and it is still there, we need to do something to avoid any complications. When I came back a week later, Dr. Hill did another test on my cervix – and my cervix returned back to normal. Dr. Hill asked me, “What happened? What did you do? And I said, God did it. I felt a big sense of relief.”

As Amarachi’s pregnancy progressed, she continued to see Dr. Hill for her baby’s weekly anatomy scans. She and her baby checked out well. Thankfully, Amarachi didn’t show signs of placenta previa like she did with her first pregnancy, a condition where the placenta covers parts of the cervix which can lead to severe bleeding and preterm birth. She had no major complications other than the physical discomfort of being pregnant. Since the baby sat lower, she had a lot of back pain and wasn’t able to exercise like she did when she was pregnant with her daughter. Once the baby was full term, Amarachi had a scheduled induction for April 12, 2022. But it turns out her son had other plans on when he’d make his debut. 

“I remember doing my regular chores at home and running a few errands,” said Amarachi. “Ten days before my scheduled induction, I started to feel intense pressure. I didn’t know I was going into labor because with my daughter, I was induced. I started to feel pressure in my lower back. The feeling was coming every 10 minutes or so. When I got home, I told my husband that I think I was going into labor. I was having excruciating pain. By the time we got to the hospital, I was already nine centimeters dilated. My labor progressed rather quickly. In less than an hour and with one big push, our baby boy was here.”

On April 2, Amarachi and David welcomed their son, Peter, at CHRISTUS Santa Rosa Hospital – Westover Hills. He weighed 6 pounds, 7 ounces. From the moment they laid eyes on him, he stole their heart.

“I was so emotional when I first saw him and cradled him in my arms,” said Amarachi. “It was just an amazing feeling to meet our beautiful son. He was healthy and perfect in every way. I had a wonderful experience with Dr. Hill and his team. That is why I asked to go back to Dr. Hill for my second pregnancy. If I had to be seen again by a specialist, I wanted to be seen by Dr. Hill. He and his staff are very caring, pleasant and professional. They know you by name – and don’t treat you like you are just a patient. Thankfully, I didn’t have complications this time around. From my experiences with my first and second pregnancies, I’ve learned that it really helps when you trust and feel comfortable with your doctor. That’s how I have always felt with Dr. Hill. He has your best interests and your baby’s interest at heart.”

The Ogus welcomed Peter into their family and feel blessed that they had the care and support they needed at the Center for Maternal and Fetal Care.

The Ogus say 2-month-old Peter is doing well and is the perfect addition to their family of four. Their daughter loves her little brother and is getting used to not always being the center of attention. While the Ogus are adjusting to taking care of a newborn and toddler, they thank God for their blessings.

“This pregnancy was such a blessing. The reason my husband and I named our son Peter (meaning the rock) is because God was and continues to be our rock,” said Amarachi. “I unfortunately suffered a miscarriage prior to becoming pregnant with Peter. We were so devastated, but we trusted God to help us heal and restore us, which He did! When I was 10 weeks pregnant with Peter, my husband became very ill and was hospitalized for one week. This was a very difficult time because I was dealing with severe morning sickness and taking care of my husband. Through it all God was faithful and again was our rock through it all.” At the Center for Maternal and Fetal Care, our team of dedicated specialists delivers peace of mind to women and their families through coordinated, comprehensive and compassionate care. To learn more about The Center for Maternal and Fetal Care, please visit: https://www.christushealth.org/childrens/services-treatments/womens-services/maternal-fetal-medicine

An Unexpected Journey

Jeneva Sotello and her husband Vernon Kistler were surprised when they discovered they were expecting another baby. They hadn’t planned on welcoming a new addition, and they were initially stressed and worried about how they would manage with an already full household. But they soon embraced the idea and couldn’t wait for Baby Vernon’s arrival.

Because she had no problems during pregnancy, Jeneva decided to deliver Baby Vernon at CHIRSTUS Santa Rosa Hospital – Westover Hills. The couple didn’t anticipate needing access to a level IV neonatal intensive care unit (NICU) and weren’t expecting anything out of the ordinary. However, as soon as Baby Vernon was born, he would need to be transferred to The Children’s Hospital of San Antonio (CHofSA) because he had trouble breathing.

“I barely got to see him after delivery. The nurses took him immediately and then informed me that he would need to be transferred because he was in distress,” said Jeneva. “I got to give him a quick kiss, and then they whisked him away.”

Jeneva had to spend the night in the hospital because doctors wanted to monitor her after giving birth; she would have to wait until the next day to see Vernon again.

“As soon as I was discharged, I headed over to CHofSA so I could see my baby. The doctors had Vernon connected to a bunch of machines and were giving him lots of medication because he wasn’t responding to any of the other treatments,” said Jeneva. “It was a scary sight.”

Vernon had a condition called meconium aspiration syndrome. It happens when a baby breathes a mixture of meconium and amniotic fluid into the lungs right around the time of birth. Meconium is an early stool that a baby passes soon after delivery; sometimes, like in Vernon’s case, it happens when the baby is still inside the uterus. If not immediately addressed, meconium aspiration can make a baby extremely sick and even cause death. Meconium stain amniotic fluid occurs in one of 10 pregnancies, with 5 percent of these infants developing meconium aspiration syndrome.

Because Vernon had meconium aspiration syndrome, he was at risk of developing hypoxic-ischemic encephalopathy (HIE). A neonatal brain injury, HIE occurs when a baby’s brain does not receive oxygen and can cause brain impairments, including epilepsy, developmental delays and motor and cognitive skill problems.

Dr. Maria Pierce, medical director of the Neonatal Intensive Care Unit at The Children’s Hospital of San Antonio, used a whole body cooling technique to lower Vernon’s body temperature.

Dr. Maria Pierce, a neonatologist at CHofSA, initiated a procedure called whole body cooling to help lower Vernon’s body temperature. The process helps slow down the brain’s metabolism to prevent further damage. His care team also placed Vernon on an extracorporeal membrane oxygenation (ECMO) watch. ECMO is a heart and lung bypass machine that pumps and oxygenates blood outside the body allowing the heart and lungs to rest until they have time to recover. CHofSA is one of only a few centers in the region that can perform ECMO to support these babies.

Thankfully, Vernon never needed ECMO because as soon as Jeneva arrived and was able to be near Vernon, he started to turn a corner. His breathing and other vital signs steadily improved.

“It was like Vernon knew his mom was near and could relax,” said Jeneva. “From there, he just continued to get stronger and better.”   

Vernon spent 40 days in the Neonatal Intensive Care Unit at The Children’s Hospital of San Antonio. Doctors monitored him closely and were ready to use ECMO as a life-saving measure. Fortunately, his condition improved and ECMO was not needed.

Jeneva and her husband were relieved that Vernon was improving. They had never experienced anything like this with their other children, so everything was somewhat chaotic.

“We just didn’t know what to expect, and it was overwhelming going back and forth to the hospital while managing our other kids and our home-based business,” said Jeneva. “And not knowing how much longer he would have to stay in the NICU was hard, too.”

Vernon was born on January 28 and spent 40 days in the NICU at CHofSA before being discharged on March 9. 

Since he’s been home, Vernon has been doing really well. He’s been growing and is always hungry.

Jeneva says Vernon is always smiling, and the other kids love to play and talk to him. He has reached several milestones, and doctors expect him to grow into a normal, healthy child.

Although Vernon’s experience was stressful for their family, Jeneva and her husband know they were in the right place at the right time.

“All of the nurses and the doctors who took care of Vernon were incredible, especially Dr. Pierce. She would always keep me updated no matter what,” said Jeneva. “I couldn’t always be at the hospital because I had other kids to take care of, but I know Vernon was always in good hands, and I didn’t have to worry constantly.”

When asked about what Jeneva would say to other mothers facing similar circumstances, she said she would tell them to lean into prayer and leave it in God’s hands.

“The whole time we were going through everything at CHOSA, I just kept believing that everything was going to be OK, and it was. I had every faith in the doctors and the rest of the care team and knew in my heart that everything would be all right,” she said.

To learn more about the Level IV NICU at The Children’s Hospital of San Antonio, please visit: https://www.christushealth.org/childrens/services-treatments/nicu.

Small But Mighty

When Josefina Betancourt learned she was pregnant for the fourth time, it came as shocking news. It was not a planned pregnancy, and she had her hands full with three other children, including an 8-month-old. But as time progressed, she and her husband became increasingly excited about the arrival of a new addition to their growing family.

With this pregnancy, Josefina decided to try a different obstetrician, one that was a bit more convenient and closer to home. After studying some online reviews and doing some research, Josefina selected Dr. Mallory Thompson at The Women’s Center at Westover Hills. 

Her first trimester was uneventful, and Josefina was feeling blessed that she was not experiencing any symptoms. Everything was going well until she had her first anatomy scan.

During her appointment, Dr. Thompson and her team noticed that Josefina’s baby had some extra skin and fluid behind its neck. At the time, Dr. Thompson suspected that the baby had Turner’s Syndrome, a condition that occurs only in females when one of the X chromosomes is partially or entirely missing. It can cause a variety of medical and developmental problems, including short height, failure of the ovaries to develop, as well as heart defects. But because Josefina and her husband were soon going to have a gender reveal party, Dr. Thompson suggested not researching Turner Syndrome until after the party. She reassured Josefina they would further discuss the findings at the next appointment and that for the time being she wanted Josefina to enjoy her gender reveal party.

Shortly before holding a gender reveal party, the Betancourts learned their baby daughter might be born with a rare condition known as Turner’s Syndrome.

Josefina and her husband went forward with the gender reveal party and were excited they would be having a girl. In the back of her mind, though, Josefina couldn’t help but worry. She decided to arm herself with knowledge, so she and her husband read everything they could about Turner Syndrome to learn more about the condition and what to expect. 

About a month after the initial anatomy scan, Josefina had another appointment with Dr. Thompson. This time, now that Josefina knew the gender of her child, Dr. Thompson discussed Turner Syndrome and what it would mean for Josefina’s baby, who she would eventually name Diana. Dr. Thompson referred Josefina to Dr. Emma Rodriguez, a maternal-fetal specialist with the Center for Maternal and Fetal Care at The Children’s Hospital of San Antonio. During the first appointment at the specialty center, Dr. Rodriguez noticed an issue with Diana’s heart.

Josefina was referred to Dr. Emma Rodriguez with the Center for Maternal and Fetal Care at The Children’s Hospital of San Antonio. Dr. Rodriguez kept close tabs on Josefina as her pregnancy progressed.

“At that point, everything was just so overwhelming, but I was grateful that my baby and I were in the hands of a great team of doctors,” said Josefina.

As soon as Josefina reached her third trimester, Dr. Thompson gave Josefina clear instructions to head straight to The Children’s Hospital if she felt she was going into labor. Diana would need access to the neonatal intensive care unit (NICU) when she was born.

When Josefina went in for one of her regular appointments at almost 37 weeks, Dr. Rodriguez’s team noticed that Josefina’s amniotic fluid was low. They decided to admit Josefina to Children’s and administered an IV. The IV did not help increase the amniotic fluid and the doctors decided to induce labor. The drug used to induce labor, Pitocin, had to be stopped and started a couple of times because it was accelerating Diana’s heartbeat. Josefina was admitted to the hospital on a Tuesday and finally, on Thursday, August 29, 2019, Diana was born.

“I carried Diana until she was 36 weeks and five days old, which was a real blessing considering that the mortality rate for babies with Turner Syndrome is high. The fact that Diana made it to almost full-term was a miracle in itself,” said Josefina. 

The immediate moments following Diana’s birth were touch and go. Josefina was only able to touch and kiss her for a few brief seconds before being handed to the NICU team who started administering oxygen to Diana because she wasn’t breathing.

Josefina was able to hold Diana for only a brief moment before the team from the Neonatal Intensive Care Unit began giving her oxygen to help her breathe.

“Thankfully after a short time, she responded and started crying. It was the most beautiful sound in the world,” remembers Josefina.

Shortly after birth, Diana had an echocardiogram. The ECHO revealed that Diana’s aorta was narrow and she would need a complex procedure on her heart known as an aortic arch repair.

Dr. Daniel Nento, chief of pediatric cardiothoracic surgery and extracorporeal membrane oxygenation at Children’s, and his team, whom Josefina and her husband had the opportunity to meet prior Diana’s birth, communicated the diagnosis and the implications.

Dr. Daniel Nento, a pediatric cardiothoracic surgeon, carefully explained Diana’s condition and the procedure he needed to perform on her tiny heart.

“It was definitely scary and not what we wanted to hear, but Dr. Nento’s thorough explanation in a very calm, confident and straightforward manner was helpful,” said Josefina. “We knew that our baby girl was in great hands.”

Six days after she was born, Diana underwent open-heart surgery and it was a success. The surgery team at Children’s was clear with Josefina and her family that the procedure would take seven to eight hours. Josefina recalls those hours being the longest of her life. But every step of the way, they would receive updates personally or via text letting them know how Diana was doing.

In addition to the aortic arch repair, Diana would need a gastrostomy tube, often referred to as a G-tube, to help with her feeding. After the surgery, Diana presented paresis of the left vocal fold and eating by mouth was a challenge.

In total, Diana stayed in the NICU for nearly two months and went home at the end of October. A little over a year later, she required a second heart surgery. Her cardiologist, Dr. Jesse Lee, noticed there was a tissue forming under her bicuspid valve that continued to grow and was obstructing her blood flow. The only way to remove that tissue was for Diana to have another surgery.

“She did amazingly well, so well that she was discharged five days later for a procedure that I was told to expect a recovery period to be between seven to 14 days,” said Josefina. “She had no complications, and we were extremely grateful.”

Today Diana lives a life like many other healthy 2-year-olds. She has some noticeable physical characteristics common in Turner Syndrome, like lymphedema in her hands and feet and a wide weblike neck, but that has not stopped her.

“She loves to dance and sing; she loves books and enjoys reading and playing. We’re working with her to get her to eat more orally,” said Josefina.

Josefina is grateful for the medical team at The Children’s Hospital for giving Diana the chance to have a joyful childhood. Today, Diana’s favorite activities are singing, dancing, playing and reading books.

Josefina and her family are grateful to the team at Children’s including Dr. Rodriguez and Dr. Nento for their care and support during their journey.

“Their expertise and knowledge are admirable to me. I’m so grateful Diana received the attention and care she needed so early on,” said Josefina. “The doctors were always willing to meet with us and were very transparent so that we were aware of what was going on and the plan of action.”

Josefina was particularly impressed by Dr. Nento and how he could perform heart surgery on such a tiny baby and heart. His abilities and compassion blew her away.

As Diana continues to grow, Josefina hopes that she will be able to experience a joyful childhood and believes that without a doubt, her daughter is destined for great things.

“I know in my heart that Diana is a fighter. Having gone through so much since birth, I know that she has a wonderful mission and purpose in this life. And my goal is to make sure she finds it and leads a happy and healthy life,” said Josefina.

To learn more about the Heart Center at Children’s, visit: https://www.christushealth.org/childrens/services-treatments/heart-care

Heart Full of Hope

Joanna Hargett and her husband, James, were on a whirlwind trip across North America when she discovered she was pregnant with her third child.  

“Our two other children were young and not in school, so we decided to join my husband on his business trips and enjoy some quality family time,” said Joanna. “When I learned I was pregnant, I knew it was time to get back home.”

After Joanna and her family settled back into their home in Brady, Texas, located about two-and-a-half hours from San Antonio, she went in for her first prenatal visit and ultrasound. Joanna’s motherly instincts kicked in during the sonogram, and she knew something was not right. 

“It took them forever to find the heartbeat, and that made me nervous,” said Joanna. “I messaged my husband and told him that something was wrong with our baby’s heart.”  

Joanna was referred to maternal-fetal specialist Dr. Lissa Melvin with the Center for Maternal and Fetal Care at The Children’s Hospital of San Antonio. Bound and determined not to sink into despair, Joanna remained calm and told herself not to worry.

“I leaned on my faith and knew whatever was happening, it was in God’s hands,” said Joanna. “I knew I had to remain strong not only for the child I was carrying – Madeleine ‘Maddy’– but for my other two daughters I had at home,” Joanna said.  

When went to see Dr. Melvin,  she informed Joanna that her baby had a condition known as hypoplastic left heart syndrome, a rare and complex heart defect that happens at birth. When a baby has hypoplastic left heart syndrome, the left side of their heart is underdeveloped, leaving the right side of the heart to do all the work. While advancements in modern medicine have improved the outlook for babies born with hypoplastic left heart syndrome, there are still cases in which babies do not survive. 

Dr. Lissa Melvin, a maternal fetal medicine physician, helped to diagnose Maddy’s heart condition.

Dr. Melvin referred Joanna to pediatric cardiologist Dr. Monesha Gupta at The Children’s Hospital. Dr. Gupta is the director of the Fetal Heart Program and she began to track Maddy’s development.  

Dr. Monesha Gupta helped develop a treatment plan before she was even born.

“Once I realized that Maddy would require multiple surgeries, one at birth and one at six months, I decided we couldn’t continue to make the trip from Brady regularly,” said Joanna. “But I was tired. I was pregnant, and I had no energy. I didn’t want to move.”

Not too long afterward, Joanna and her husband learned about a family interested in renting their house, allowing them to find an apartment closer to the hospital.  

“Things lined up perfectly, confirming that we made the right choice to move closer to Children’s, at least for the time being,” said Joanna.  

As Joanna settled her family into the apartment, she received an unexpected and unsettling phone call. The Heart Center team had weighed all the options and felt that she would benefit from having access to an interventional cardiologist immediately after birth or after her surgery. Due to the unavailability of an interventional cardiologist during the time of her scheduled delivery, it was recommended for her to consider delivery and cardiac surgery in Houston.

The phone call threw Joanna for a loop. After all, she had already uprooted her family, and the idea of moving to a new city where she did not know anyone was quite daunting – especially nine months pregnant. 

After evaluating her options and knowing Children’s surgeons could perform Maddy’s surgery, Joanna and her husband decided to stay in San Antonio. She put all her faith in the medical team at Children’s and knew deep down she had made the right choice.  

“I understood that I owed Maddy everything I could give her,” said Joanna. “But I also understood that I was a mother to a 3-year-old and 2-year-old, and I owed them everything as well. I had made my decision.”

Knowing there was a chance that Maddy might not survive, she did what any mother would do: plan. She knew for sure that she wanted to have Maddy to baptized, so Joanna enlisted a chaplain’s help and spoke to Child Life about what steps she would need to take if the worst-case scenario came to fruition.  

“It was all really overwhelming, and I just wanted to be ready for either outcome,” said Joanna.  

When the delivery day arrived, Joanna had her first C-section and was not sure what to expect. Since learning that Maddy had a heart defect, she had remained strong, but when she heard Maddy crying after she was born, Joanna let her tears finally flow.  

“The entire time, I had been strong and kept a handle on my emotions, but when Maddy made her entrance into the world, I could no longer keep them inside,” said Joanna.

As soon as Maddy was delivered, nurses rushed her to the neonatal intensive care unit (NICU), where the chaplain baptized her. Joanna could not hold Maddy for the first couple of days, but she remembered that it was truly amazing when she finally had the opportunity. 

Maddy was born on the Thursday before Thanksgiving, and less than a week later, she had her first surgery performed by Dr. Victor Bautista-Hernandez, a pediatric cardiothoracic surgeon at Children’s.  

“When I first met with Maddy’s mom months before delivery, we had a long and frank conversation regarding her daughter’s severe condition,” said Dr. Bautista-Hernandez. “Maddy not only had one of the most complex forms of congenital heart diseases, hypoplastic left heart syndrome, but also one of the worst anatomic subtypes. Out of the four valves of the heart, she had two completely closed and non-functional and one with significant leakage. In addition, her ascending aorta and aortic arch were very small (only 2 millimeters at most) which significantly complicated the surgery.”

Dr. Victor Bautista-Hernandez performed surgery on Maddy’s heart when she was less than a week old.

“Despite the challenges, Joanna and James wanted their daughter to undergo surgery with our team at Children’s Hospital of San Antonio/Baylor College of Medicine and that determination remained over time,” the surgeon added.   

“The day of the surgery is what everybody looks at, but you need a talented team of health professionals to get one of these patients through,” said Dr. Bautista-Hernandez. “The excellent care provided by our MFM, pediatric cardiology, ICU teams and all others led to a well-preserved newborn going to the OR in excellent condition and having a speedy and uneventful recovery.” 

“There were hundreds, if not thousands of people praying for Maddy,” said Joanna.  

Maddy’s procedure lasted between six and eight hours. Too anxious and worried to sit still in a waiting room, Joanna and her husband sat in their car until the surgery was over. 

Maddy made it through surgery, and Joanna vividly remembers how she reacted when she saw her daughter with an open chest and her heart beating. “I just broke down and cried so hard. It was one of the hardest moments of my life,” Joanna said.  When performing heart surgery on a newborn, the heart swells. The incision is left open for a few days to allow the swelling to go down so the heart fits back into the chest.

She recollects how Maddy’s skin was cold to the touch because her chest was open and how scary some of those moments were. Joanna would sit at Maddy’s bedside and pray the rosary every day. After the cardiovascular surgeon stitched Maddy’s chest closed, Joanna was able to breathe a sigh of relief. She remembers going to see Maddy and holding her hand. As Joanna started talking to her newborn daughter, Maddy looked up and stared into her mother’s eyes.  

“At that moment, I knew it was going to be OK. She is here. She knows me. I know her. I finally felt like her mother and not a spectator on the sidelines,” said Joanna.

Maddy peeks out of her crib as her mom Joanna gets her ready to leave the NICU.

Plans were in motion to get Maddy home. Then, around Christmas, Maddy’s cardiology team suspected a narrowing of her aortic arch, so Maddy underwent a catheterization to gather more data about her heart – information an echocardiogram would not necessarily reveal. Fortunately, her surgery looked great and the arch was intact, so she did not need a balloon or stent. It was welcome news.

On February 11 after spending 85 days in the NICU, Maddy was released home to be reunited with her two older sisters. She will need to be seen at least once a week and then back again in four months for another surgery.

After 85 days in the NICU, Maddy’s doctors gathered to say good-bye as she headed home with her family.

She has been doing well and has experienced only minor issues like acid reflux, arrhythmias, and is fussy about eating, but otherwise, she is progressing well. Doctors are hoping the G-tube they inserted will help with that, and Maddy will soon be on her way to a full recovery.  

Through it all, Joanna’s faith, while shaken, helped to see her and her family through. She said she is grateful to the team at The Children’s Hospital of San Antonio for all their support.

Maddy’s big sisters were excited to celebrate outside The Children’s Hospital on the day Maddy graduated from the NICU and went home.

“Maddy is a symbol of God’s faithfulness and will forever be my rock,” said Joanna. “God’s will has been manifested throughout our entire journey, and I know without a doubt, it will continue to unfold throughout Maddy’s life.”

To learn more about the Heart Center at The Children’s Hospital of San Antonio, visit the Heart Center online.

A Parent’s Guide to Understanding Autism: April is Autism Acceptance Month

Andrew Martinez, PhD, Clinical Director, Autism Program, Psychology Department

What is Autism Spectrum Disorder (ASD)? ASD is a lifelong neurodevelopmental disorder where individuals have social and behavior difficulties. The first (and main) symptom is trouble with social skills. Social skills do not come as natural to individuals with ASD as they do for those without ASD. Social difficulties are different in everyone, but these are some common symptoms:

• Poor/avoidant eye contact
• Limited or unusual gestures
• Trouble using nonverbal language (e.g., eye contact, gestures) to communicate
• Trouble reading emotions, feelings, and/or facial expressions
• Trouble making and keeping friends
• Not understanding social relationships (e.g., marriage, friendships, etc.)
• Not interested in socializing with others
• Trouble having a shared conversation

Also, individuals with ASD frequently have restricted and repetitive behaviors. These behaviors are different for everyone, but these are some common symptoms:

• Hand flapping
• Full body rocking
• Other unusual repetitive motor movements
• Repeating someone else’s speech (called echolalia)
• Repeating scripts or specific statements they have heard (called delayed echolalia)
• Trouble adjusting to changes with routine
• Having specific routines or habits that must always be done a certain way
• Lining up or organizing things
• Obsessed with specific topics or interests where they know “everything” about it
• Interested in unusual topics or interests compared to others their age
• Sensory sensitivities – loud noises, clothing, food textures, specific textures, grooming, etc.

It is important to note that just because someone has social problems and repetitive behavior, they do not necessarily have an ASD. Many other disorders have similar or overlapping behaviors (e.g., ADHD, intellectual disability, anxiety, mood disorder, schizophrenia spectrum disorders, etc.).

What are some early behaviors/risk factors I should look out for? Risk factors vary depending on age, but here are some risk factors for infants and toddlers:

• Does not smile back at you when you smile at them (called social smiling)
• Does not respond to their name
• Has trouble making requests
• Avoidant or poor eye contact
• Seems to be “in their own world” most of the time
• Is not interested in interacting with you or in social games (e.g., peek a boo)
• Does not share their interests with you
• Unusual motor, verbal, or sensory behavior
• Unusual or repetitive play

In addition, two other risk factors are having a sibling or another immediate family member with ASD and having a specific medical condition associated with ASD.

Dr. Andrew Martinez, the author of this blog, evaluates a child for autism. Dr. Martinez recommends parents first check with their child’s pediatrician before considering a visit to the Autism Clinic.

If my child is showing symptoms of ASD, what should I do? The first thing you should do is talk to your pediatrician. It is very important to be open with them and share your concerns. They are very good at knowing what is typical development versus delays or concerns. They may have you fill out some questionnaires to help them see if there are enough symptoms to warrant further workup. If they notice concerns or are unsure, they will refer you to a specialist. Referrals will more than likely be sent to one of the following specialists: psychologist, neuropsychologist, developmental pediatrician, neurologist, or neurodevelopmental pediatrician. At The Children’s Hospital of San Antonio (CHofSA), these referrals will be sent to either Dr. Andrew Martinez, Dr. Melissa Svoboda, or Dr. Veronica Villarreal.

Dr. Melissa Svoboda is the section chief of neurology at The Children’s Hospital of San Antonio. Dr. Svoboda has extensive experience and knowledge in the evaluation and diagnosis of autism in children.

In addition, your pediatrician might also refer for therapies while you wait for a specialists’ appointment (if it is needed). These therapies often include speech therapy (ST), occupational therapy (OT), or physical therapy (PT). They may also refer to Early Childhood Intervention (ECI) if they are under 3 years old. If your child is older than 3 years old, they may encourage you to request an evaluation through your local school district.

What does an ASD evaluation look like? Evaluations vary depending on who is completing it, but most ASD evaluations include a detailed parent interview and standardized testing. Interviews are used to gather details about the current ASD-like symptoms, when they started, and how frequent or severe they are. The interview is also used to gather information about the family, the gestational history, the child’s development, any other medical or psychiatric problems, and what services or therapies they have received. Standardized testing is used to see how well a child functions compared to other children their age. Testing often includes intelligence (i.e., IQ), language, motor, sensory, and autism specific tests. It is very important to note that tests are used to gather data. There is not one specific test used or that can diagnose ASD alone.

Nurse Practitioner Katherine Holt conducts an interview with a parent whose child is undergoing an autism evaluation.

At CHofSA, an autism evaluation begins with a clinician interviewing a caregiver and then observing and interacting with the child. The next steps will be determined by results from the initial appointment. For some children where the doctor can tell during that appointment they have an ASD, they will be diagnosed with ASD and referred for treatment. If the doctor is not sure, they will be recommended for further testing. Testing might be with only the same doctor or might be with our multidisciplinary autism team. If the doctor is sure the child does not have an ASD, they will speak with you about treatment (if it is warranted). Regardless of the diagnosis, we will make sure to discuss your child’s strengths and weaknesses and come up with a plan to help them.

What happens after an ASD diagnosis is made? This varies depending on where and who is evaluating your child. At CHofSA, we will discuss the results and treatment plan with you. Treatment options will depend on the child’s specific difficulties, but Applied Behavior Analysis (ABA) therapy is often recommended. ABA is a therapy that focuses on increasing positive or helpful behaviors and decreasing negative or unhelpful behaviors. ABA therapy can be used to work on social skills, language, inappropriate and harmful behaviors, and many other skills. In addition, ST and OT are often recommended, as many children with ASD have trouble with speech, language, motor, sensory, and adaptive skills.

In addition, we will also discuss what medical work up is needed to find the cause of ASD (also called etiology). This often includes a genetic evaluation and possibly a neurological work up. Also, there are currently no medications or other medical treatments approved for ASD. There is no cure for ASD. Some children with ASD take medication or have other medical treatments, but these are due to other factors and NOT ASD alone. There are several alternative therapies that are available; however, there is very little or no data to prove these work or help. Most of these therapies are expensive (cash pay only as insurance will not cover them) or can be dangerous for children. For this reason, we strongly recommend you speak with your pediatrician or autism specialist about any alternative treatments you are considering. Just like you, we want to keep your child safe.

Lastly, ASD is a lifelong disorder. Individuals with ASD symptoms will fluctuate over the years. Thus, it is important to connect you with community resources and develop a strong support system. At The Children’s Hospital of San Antonio, we will connect you with local and statewide resources. We will follow up with you as needed, and we will always be here to answer any questions or concerns that may come up.

If you are concerned about your child’s development, talk to your pediatrician first. If you need a primary care physician for your child, visit our website to find a pediatrician near you.