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.

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)

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.

Our little fighter

Christina wanted to give her husband, Sergio, a child of his own. A mother to three children from a previous marriage, Christina had her fallopian tubes tied, so the couple would need to go through in-vitro fertilization (IVF) to have a child.

After discussing it as a couple, they decided it was their best chance to give Sergio the baby he always wanted.

“IVF is hard. It was a beautiful journey, but it was tough. My hormones and emotions were all over the place. I experienced a lot of morning sickness – more than I experienced with my three other children,” said Christina.

Despite the uncomfortable pregnancy, Christina was excited when she learned she was having a girl and decided they would call her Hannah.

Hannah’s expected due date was Dec. 23, 2021. Christina thought she and her family would have time to plan for their new addition, but Hannah had other plans.

On Sept. 26, 2021, Christina had severe contractions, and her blood pressure skyrocketed. She was scared and overwhelmed – not only for herself, but for Hannah. The next thing she knew, Christina was being prepped for a C-section.

Thankfully, Christina had already chosen to give birth at The Children’s Hospital of San Antonio, so Hannah would have access to a Level IV Neonatal Intensive Care Unit (NICU).

Weighing a little over two pounds at birth, baby Hannah made her entrance into the world.

“Immediately after she was born, she had a ton of problems. If it wasn’t one thing, it was another,” said Christina. “She had to be put on three or four breathing machines because her lungs were super premature.”

Hannah also was born with a heart defect known as patent ductus arteriosus (PDA). An opening between two blood vessels leading from the heart, small PDAs usually cause no symptoms, but larger PDAs, like the one Hannah had, can cause the heart and lungs to work harder and cause permanent damage to the blood vessels in the lungs. 

Hannah also had protectors over her eyes because they weren’t ready to be opened yet. Seeing her baby in this state was heartbreaking for Christina, and she wanted nothing more than to hold her.

“I developed a bad case of postpartum depression. It was so hard to see Hannah like that and not be able to hold her close,” said Christina.

A few days after she was born, Hannah had surgery to close the PDA and did exceptionally well.

“Dr. Daniel Nento did an amazing job, and we were incredibly grateful to everyone on the surgery team who took such good care of her,” said Christina. “We were in awe of the surgical team who repaired Hannah’s PDA and for their ability to operate on such a tiny baby.”

Dr. Daniel Nento, a pediatric cardiothoracic surgeon with the Heart Center, performed surgery on Hannah’s heart when we was just a few days old.

Aside from the surgery to repair her PDA, Hannah did not require any further surgeries after she was born – quite remarkable for a tiny baby.  

“Hannah developed a reputation for being tough and feisty like her mom,” said Christina. “It’s always the tough ones who make it.”  

Hannah was not entirely out of the woods yet. She developed some serious lung and kidney infections and some other challenges, but not once did Christina give up on her daughter. Hannah was a living, breathing miracle and her family was so grateful she was alive.

In total, Hannah was in the NICU for four months and finally went home Jan. 3. Since she spent the holidays in the hospital, nurses dressed her up in outfits, including a bee costume for Halloween.

“What the nurses do for the NICU babies is incredible, and we were so grateful we were at Children’s. They are so well-equipped to handle premature babies and knew exactly what to do. I would highly recommend them to anyone, and if I have another baby myself, that’s where I’m going,” said Christina.

Christina and her family are incredibly thankful for Dr. Cheryl Motta for thoroughly explaining what was happening and why. Christina also remembers a kind and compassionate nurse named Renee, who helped her hold Hannah for the first time.

Hannah’s family was grateful for the way Dr. Cheryl Motta, a neonatologist, helped them understand more about Hannah’s condition and the plans for treatment.

“She was amazing, and I will always remember her for helping me create that moment with my daughter,” said Christina.

Since she’s been home, Hannah has been doing well. Initially, she couldn’t keep her food down, and Christina grew concerned that they might have to return to the hospital. In addition to all her other issues at birth, Hannah had paralysis of her left vocal cord, which made it challenging for her to eat and cry. Her older siblings love having her at home and are a big help to Christina.

“For so many months, my other children only saw photos of Hannah, so they are happy to have her around,” said Christina.

Hannah developed a reputation for being a feisty little fighter while she spent four months in the NICU at The Children’s Hospital of San Antonio.

Christina is unsure what the future holds for Hannah and takes things one day at a time. Given everything her daughter’s been through, she’s made remarkable progress and is a blessing for Christina’s family. Her biggest hope for Hannah is for her someday to aspire to become a doctor or a nurse in the NICU and help tiny babies like herself survive and thrive.

“Hannah may be small, but one thing is for sure, and that is that she’s a fighter. I will never underestimate her strength,” said Christina.  

Click on the links to learn more about Heart Care and the NICU at The Children’s Hospital of San Antonio.

Beating the odds: Our newborn son’s unexpected congenital heart diagnosis

From the pitter patter of little feet running across the room to a hungry newborn waking up to nurse again, to getting their oldest child ready for school, Shanon Maddux and her husband, Jeremy, have their hands full. They are parents to 8-year-old Bryley, 2-year-old twins, Laine and Forrest, and 4-month-old Easton, the newest addition to join their expanded family.

“Last April, I was surprised when I found out I was pregnant with Easton,” said Shanon. “My husband and I had been trying for several months to have another baby. It was easy to get pregnant the first and second time, but we struggled to have our fourth child. We thought another baby was just not in the cards for us. And then, Easton came along, and everything changed at that point. My husband and I were excited and thrilled to become a family of six.”

Other than feeling overly tired, flu-like and nauseous during most of her first trimester, Shanon’s pregnancy was going well. As her second and third trimesters progressed, Shanon developed placenta previa where the baby’s placenta partially covers the cervix which can lead to severe bleeding during pregnancy and delivery. As a precaution, Shanon had sonograms every four to six weeks – and each time – the placenta previa was gradually resolving itself. Throughout her pregnancy, Easton was getting bigger and stronger, and his measurements were right on target.

“His ultrasounds were perfect,” said Shanon. “His head measurements were always good, and he was growing and developing normally. I asked the ultrasound technician how my baby’s heart was doing. She said all four chambers were working well and his heart rate was within the normal range. Everything was checking out for Easton. He was a healthy and strong baby.”

When Shanon was 34 weeks along, she began leaking amniotic fluid. Concerned, her OB-GYN had her admitted to Labor and Delivery. Her doctors wanted to make sure she had enough amniotic fluid, which she did. Shanon was put on steroids for two days to make sure Easton’s premature lungs were strong. Two days later, on November 17, 2021, Easton was born via Cesarean section since he was a breech.

While this should have been a joyous occasion – nerves quickly set in. Within a minute or two of Easton being born, the nurses were having a tough time oxygenating him. An hour after he was born, Shanon still had not seen her baby. Then, as she was recovering in the post-op room, the nurse handed her the phone – and that’s when she got the news she wasn’t expecting to hear.

“Our son had congestive heart failure,” said Shanon. “I was in total shock and disbelief because his ultrasounds showed his heart was healthy and strong. After running more tests on him, the cardiologist diagnosed Easton with transposition of the great arteries. Since they didn’t have the means and equipment to treat the defect, Easton was quickly transferred to The Children’s Hospital of San Antonio (CHofSA) within three hours of his birth so he could get the emergent cardiac care he needed.”

Transposition of the great arteries (TGA) is a rare congenital heart defect in which the two main arteries leaving the heart – the aorta and pulmonary artery – are reversed. That is why the care team had a difficult time oxygenating Easton soon after he was born. He had no oxygenated blood flowing throughout his body. The oxygenated blood was flowing in and around his heart.

The ALL KIDZ Critical Care Transport Team transferred Easton to The Children’s Hospital and once there, Shanon and Jeremy met with Easton’s care team which included his pediatric cardiologist, Dr. Chetan Sharma, his pediatric cardiothoracic surgeon, Dr. Victor Bautista, and  Dr. Maria Pierce, medical director of the Neonatal Intensive Care Unit (NICU).

Dr. Chetan Sharma, a pediatric cardiologist, was part of the team of physicians who cared for Easton.

At midnight Easton was transferred from the referral hospital directly to the state-of-the-art pediatric catheterization lab where he was awaited by his neonatologist, anesthesiologist, cardiologist and cardiovascular surgeon. With the cardiovascular surgeon on standby, Easton underwent a lifesaving emergency atrial septostomy. Creating a hole between the right and left side of the upper chambers of Easton’s heart allowed oxygenated blood from his lungs to flow throughout his body. This procedure was a temporary fix until he could have the arterial switch operation to permanently correct his transposition of the great arteries.

Shanon is grateful for the outstanding care Easton received at The Children’s Hospital of San Antonio after being born with a heart defect.

“Although the procedure went very well, Easton had more complications including a grade three intraventricular hemorrhage, an acute kidney injury and a collapsed lung,” said Shanon. “His doctors and nurses in the NICU took excellent care of him. In the beginning, I didn’t feel like there was much hope – but as the first week passed by, I decided that no matter how bad his condition was getting or could get, I would find the positive in everything. I told myself, even if they could not extubate him, the intraventricular brain hemorrhage was not progressing and he was still having spontaneous breaths and looking around. Moving forward, I would look for the positive and focus on it, no matter how uncertain Easton’s prognosis would be.”

When Easton was three weeks old, Dr. Bautista performed open-heart surgery. To redirect blood flow from one side of the heart to the other, Dr. Bautista reconstructed the heart so that the aorta would be attached to the left ventricle and the pulmonary artery would be attached to the right ventricle. Without this type of intervention, infants with transposition will not survive within their first year of life. After surgery, Easton’s chest was left open to make sure his heart had plenty of room to contract. Since Easton was doing well less than 24 hours after heart surgery, Dr. Bautista and his team closed up his chest.

“My husband and I took turns staying with Easton,” said Shanon. “He spent 55 days in the NICU, and he was also cared for in the PICU after his surgery. During his hospital stay, he was extubated and intubated many times. After his surgery, his condition began improving. He was able to breathe on his own and we worked on his feeding, because of the severity of his illness he was not able to feed successfully by mouth so he received nutrition via a G-tube. As he got stronger and made more progress, we were able to take our baby home on January 11, 2022. That was the best moment for our family.”

Easton’s parents were thrilled when they were finally able to take him home after spending 55 days in the NICU.

Today, Easton is a healthy, happy 4-month-old. He is reaching his developmental milestones like a normal baby his age. He is rolling over, laughing, smiling and doing his little baby babble. He meets regularly with Dr. Mario Fierro, his developmental pediatrician at The Children’s Hospital. He also has follow-up visits with Dr. Sharma for regular echocardiograms to check on his heart. During his recent visit, Dr. Sharma said Easton’s heart is strong and is doing extremely well after surgery.

“While this was a tough journey for us, our baby is doing well because of the amazing care that he received at Children’s Hospital,” said Shanon. “Dr. Pierce, Dr. Sharma and Dr. Bautista communicated with each other on Easton’s care plan. If there was a decision to be made about him, it wasn’t just one person making that decision. They made that decision together, and I appreciated that. As for Easton’s heart surgeon, Dr. Bautista was everything you wanted a surgeon to be. He was straightforward, confident and knowledgeable. He would tell me, ‘I know how to do this surgery and we’re going to get Easton to a healthy place.’ Even a month after surgery, Dr. Bautista was checking in on him. You can tell he was very invested in Easton. He was so happy, and his eyes would light up when he saw how well Easton was doing. Our family was blessed with a great team of doctors and nurses who had Easton’s best interest at heart.”

Easton continues to thrive after having two heart surgeries within the first weeks of his life.

To learn more about the heart surgery program at CHOSA, please see: https://www.christushealth.org/childrens/services-treatments/heart-care and to learn more about the NICU, please see: https://www.christushealth.org/childrens/services-treatments/nicu.

A Prayerful Journey for Jonah

Sylvia and Matt Arismendez were thrilled when they heard they were pregnant with their fifth child. They were looking forward to a new bundle of joy to love.

All of Sylvia’s other pregnancies were normal in that neither she nor her babies experienced any major complications. But this pregnancy was shaping up a little differently. Not only did Sylvia have gestational diabetes, but she had an excess amount of amniotic fluid, which can lead to pre-term labor and other issues. In addition, they also learned that their unborn baby had a condition known as right-sided congenital diaphragmatic hernia or R-CDH.

CDH occurs when the diaphragm, the muscle that separates the chest from the abdomen, doesn’t close during prenatal development. The baby’s abdominal organs push (herniate) through the defect into the chest cavity impacting the baby’s developing lungs.

“Along with learning all the aspects of this condition, we also discovered that it’s extremely rare,” said Sylvia. “And the chances of survival, especially for a right-sided diaphragmatic hernia, are extremely low.”

CDH has a prevalence of about 1-4 per 10,000 births, of which approximately 85% are left-sided (L-CDH), 13% are right-sided (R-CDH), and 2% are both sides. At first, Sylvia and Matt were told that their baby – who they would eventually name Jonah – had a 30 – 40% chance of survival. But, as they met with more specialists, that survival rate dwindled to only 5% – something Sylvia and Matt were not prepared to hear.

“At this point in our journey, we were being told that Jonah’s only option would be palliative care and that there was nothing that doctors could do to save his life,” said Sylvia.

They were determined to find another way to help Jonah and weren’t going down without a fight. So, they prayed and began exploring other possibilities.

 When they learned about a hospital in Houston that delivered CDH babies, they decided they would pursue that route and then discovered that The Children’s Hospital of San Antonio (CHofSA) provided the same services. It was right in their own backyard.

“I had a 2-year-old, 4-year-old, 6-year-old, and 8-year-old enrolled in homeschooling, and my husband was working full time. So, it was not ideal for us to pick up and go to Houston,” said Sylvia. “At the same time, we wanted to give Jonah a fighting chance and decided to inquire about what CHofSA could do to help him.”

As soon as she made the call to CHofSA, Sylvia knew they had made the right decision. That was on a Friday. On Monday, she met with Dr. Cody Henderson, neonatologist, and Dr. Katherine Barsness, Jonah’s surgeon.

Dr. Cody Henderson was among the first doctors to meet with the Arismendez family to discuss Jonah’s condition before he was even born.

The minute they walked into the hospital, Sylvia said she and Matt felt a sense of peace. Since they were devoted Catholics, the couple was comforted by all the images of Mary, Joseph, and Jesus surrounding them. 

Once again, they heard the odds were not in their favor and that Jonah had a slim chance of survival. So, they and the doctors both relied on the power of prayer. Sylvia remembers Dr. Barsness telling them the care team would pray before Jonah’s procedure, during and after. She also told Sylvia that they would do everything in their power to keep Jonah alive.

The Arismendez family were relieved to know that the expertise of surgeons like Dr. Katherine Barsness are available in San Antonio. They thought they needed to uproot their family and move to Houston to be closer to the kind of care he would need.

At this point, Sylvia was about 35 weeks into her pregnancy. To help Jonah have the best possible outcome and allow his little lungs to grow, they decided it would be best to try and get Sylvia as close to 40 weeks as possible.

Doctors scheduled Sylvia to have her C-section at 38 weeks on November 2, 2021. To the surprise of her physicians, her level of amniotic fluid reduced and went back to normal right before Jonah was born. It rarely happens and perhaps would help Jonah have a positive outcome.

“I remember the room was full of nurses and specialists ready to assist as soon as Jonah was born,” said Sylvia. “I had prepared myself for the idea that they would not give him a chance to cry. They needed to get him intubated as quickly as possible.”

Sylvia and Matt had a minister on hand to baptize Jonah right away, just in case things took a wrong turn. It was not until that evening that she was able to visit Jonah in the Neonatal Intensive Care Unit (NICU) and lay eyes on her newborn baby. She learned that he had been immediately intubated and placed on extracorporeal membrane oxygenation (ECMO). The ECMO machine is similar to the heart-lung by-pass machine used in open-heart surgery. It pumps and oxygenates a patient’s blood outside the body, allowing the heart and lungs to rest.

Jonah stayed on ECMO for six days. Sylvia and Matt later found out that it’s a regular practice for CHofSA to keep babies on ECMO for a maximum of two to three weeks because it thins their blood and increases the risk of having a seizure or stroke. Jonah did experience over 30 seizures and had a significant stroke while he was on ECMO. He wouldn’t have survived if the doctors had taken him off too early.

Jonah was off ECMO and had reached a major milestone. His next milestone would be surviving surgery.

When he was seven days old, Jonah had surgery to repair the CDH. Dr. Barsness explained to Sylvia and Matt that there was a chance that when they moved Jonah’s organs to the right cavities that his intestines may not fit, and they would have to create a pocket outside of his body until everything settled into place.

“It sounded scary, but the doctors assured us that it was normal,” said Sylvia.

Sylvia and Matt once again turned to prayer and asked everyone they knew to pray for baby Jonah. At one point, thousands of people were lifting Jonah in prayer. People from all across the world – people Sylvia and Matt didn’t even know – were praying for their baby.

Matt held his son Jonah as he recovered from surgery in the Neonatal Intensive Care Unit at The Children’s Hospital of San Antonio. The family relied heavily on their faith in God and confidence in the medical staff who cared for Jonah.

Once again, Jonah defied the odds. Doctors were able to make sure all of his organs and intestines fit. It was yet another miracle, and another prayer answered.

 “We felt God’s presence every step of the way. We knew that He was taking care of us, and we needed to trust that He was providing all the resources we needed. He had guided us to the right people when we needed them, and he helped us make the right decision for Jonah,” said Sylvia.

Jonah was turning a corner but had a couple of challenges ahead of him. First, he needed to be weaned off morphine, something Sylvia said was tough on him. After all, Jonah had been on the drug for the first two and half months of his life. He also would need a tracheostomy, a small, surgical opening through the neck into his windpipe to help him breathe better. He also was going to need a gastrostomy tube to help him eat. Despite developing multiple infections, including a bout with pneumonia, Jonah recovered and eventually was able to go home.

After four months in the NICU, Jonah was finally ready to go home with his parents Sylvia and Matt.

In total, Jonah spent four months in the NICU.

Sylvia and Matt were grateful for the physicians: Drs. Pratik Parikh, who became his main neonatologist, Dr. Barsness along with a team of other neonatologists, our occupational therapist, physical therapist, respiratory therapist and the nurses who took such great care of Jonah every step of the way.

Dr. Pratik Parikh was Jonah’s primary neonatologist during the four months that he spent in the NICU.

“Our two main nurses were Madison and Rachel. They were so wonderful with Jonah and became familiar faces to him. You could tell they cared a lot about him, which meant a lot to me,” said Sylvia.

Every time they hit a bump in the road with Jonah’s care, everyone prayed: Sylvia, Matt, the doctors, and the nurses. Sylvia said everyone on the care team was so compassionate and caring, but what impressed her the most was how they relied on God to lead them.

Now that he is at home, Jonah has progressed quickly. Sylvia says he’s active, and when he goes to physical, occupational or speech therapy, they are blown away by his development.

“They can’t believe that he was in the NICU for so long and yet is so strong and is picking up on many things,” said Sylvia. “Overall, he’s doing exceptionally well, and the doctors expect him to be a normal functioning child as he continues to grow.”

After leaving the hospital, Jonah has continued to thrive with the help of physical therapy.

It was believed that Jonah’s right lung may never function. But, once again, Jonah has defied the odds – his left lung is completely inflated, and his right one is functioning. Sylvia believes it’s the result of fervent prayer and the care he received at CHofSA.

“My hope for Jonah is that he will become a strong man physically, mentally and emotionally,” said Sylvia. “I want him to be able to share his story and serve as a beacon of hope to others.”

To learn more about the general surgery department at CHofSA, please see: https://www.christushealth.org/childrens/services-treatments/surgery/pediatric-general-surgery. To learn more about the NICU, please see: 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

In Rare Form

Feburary 28 is Rare Disease Day

Abigail is rare, and she knows it! When she was born in 2006, she had to be transferred to the Neonatal Intensive Care Unit at The Children’s Hospital of San Antonio to receive medical treatment for a condition known as gastroschisis. Gastroschisis is when a baby is born with their intestines on the outside of their body and surgery is typically required to put them back in. In addition to this rare birth defect, Abigail was also found to have a condition known as phenylketonuria (PKU). PKU is a rare disorder that prevents the body from properly breaking down substances called phenylalanine — also known as Phe.

Phe is an amino acid found in foods such as breastmilk, eggs, dairy, meat and soy. The body uses Phe to make protein which is an essential part of a healthy diet. High levels of Phe can permanently damage the nervous system and brain, causing a variety of health problems including seizures, psychiatric problems, and severe intellectual disability.

Thanks to a new treatment, Abigail no longer has a restricted diet due to a rare condition known as PKU.

Abigail was referred to a genetics team to help her and her mom navigate the world of specialty formulas and medications. Through trial and error, they were able to determine how much protein Abigail’s body could handle. After a few years of treatment, they were the first family the clinic staff thought of when a new medication — sapropterin (Kuvan) — became available to treat PKU. The medication worked; Abigail’s Phe levels were low, indicating she has hyperphenylalaninemia, a mild form of PKU. Abigail explains, “Since my blood work is in a good range and I respond to my medication, I now have an unrestricted diet and do not need to eat or drink medical foods or formula for nutrition. My diet allows me to have all the nutrition I need.” She still battles some symptoms related to PKU such as headaches, side effects from medication, and a learning disability. But that has not stopped Abigail from becoming a fierce advocate for others with rare diseases, especially PKU.

As Miss Reina Latina San Antonio Teen 2021, Abigail shares her story about living with a rare disease and encourages others to learn more.

While competing for the title of Miss Reina Latina San Antonio Teen 2021, Abigail took the pageant as an opportunity to spread awareness about PKU and other rare diseases. After winning the title, she made rare diseases her platform. “When I have events, I tell everyone about my story. I say my title, and I let people know where they can go to learn more about the rare disease community and how they can support it,” she said.

Abigail has spearheaded an awareness campaign called #LightUpForRare. She has worked hard over the last several weeks to ensure more people in our community know about Rare Disease Day and PKU on February 28. She reached out to San Antonio landmarks and businesses asking if they would illuminate their buildings in pink, green, blue and purple to support families affected by rare diseases. Thanks to Abigail’s efforts, The Children’s Hospital of San Antonio and other downtown buildings will be illuminated in these colors tonight. If you happen to see a building lit up with these colors, take a photo or video and use the tag #LightUpFor Rare on social media.

Seven Reasons to Take Your Child to the ER

Jendi Haug, M.D., Emergency Services Physician

Sometimes it is easy to know when to go to the ER – a broken bone or a cut that needs stitches. But often parents struggle with the decision of whether to take their child to the ER for other reasons.

The Children’s Hospital of San Antonio now has three emergency centers just for children. They are open 24 hours a day, seven days a week, all weekends and all holidays.

Pediatric ERs are special emergency rooms that treat children from birth until age 17. The nursing staff, advanced practice providers such as nurse practitioners and physician associates, and physicians understand that children are not just little adults. Children have their own unique physiology that is different from adults.  Their illnesses and injuries are oftentimes not treated in the same manner as an adult with similar symptoms.  In a medical emergency, your child needs to see a doctor who only specializes in treating children.

At The Children’s Hospital of San Antonio, we know children are not little adults. They require the expert care of doctors and nurses specially trained in emergency pediatric medicine. Taking a wagon ride to get an X-ray is just one way we ease a child’s fears!

Here are some examples of major and minor instances when you should go directly to your nearest pediatric emergency room:

1. Newborn with a fever: Any infant 30 days old or younger with a temperature of 100.4 degrees or higher needs medical attention. No matter how you take the baby’s temperature (armpit, forehead, frontal sensors, or rectally), a temperature of 100.4 warrants an assessment by a physician or APP.  Infants born premature or with underlying medical conditions are at an even higher risk of serious infection and should continue to come in even at older ages.
2. Difficulty breathing:  Abnormal breath sounds like wheezing or stridor can be associated with bronchiolitis or croup or pneumonia. They can be scary and cause kids to breathe fast. Kids may start working to breath- belly breathing, sucking in the skin between their ribs or refusing to lie down. These are worrisome symptoms and need to be immediately evaluated.
3. Extremity or bony deformity:  When there is an obvious deformity along with swelling or pain, they should be seen that same day for assessment of any possible fracture or dislocation.
4. Abnormal/unusual behavior or altered mental status: You know your child and are the best gauge of your child’s behavior and their typical baseline. If something is not quite right, they need to see a medical provider for a complete evaluation.
5. Open wounds not healing on their own: Wounds can be common for kids after a fall or other injury.  Wounds that are large enough to be considered lacerations should be repaired soon in order to obtain better wound healing and less scarring. In addition, good cleaning and irrigation will help to prevent infections.
6. Prolonged vomiting and diarrhea: Infants and young toddlers can rapidly become dehydrated, so even a few hours of symptoms can make them sick.  Lack of a good amount of wet diapers or failure to urinate for a prolonged amount of time is a worrisome sign of dehydration for any child.
7. Fainting or seizure activity: These symptoms should be assessed by a physician or advanced practice provider to determine why these episodes might be happening, especially if they are frequent or prolonged occurrences. A trip to the ER is warranted if your child has not been previously evaluated for fainting or seizures by a pediatric cardiologist or neurologist. Sometimes these symptoms are harmless, but they could also be related to serious medical conditions.

While this list is not exhaustive, these are just a few reasons why your child might require a visit to one of our emergency rooms.  When available, discuss any questions you might have regarding the need for emergency care with your child’s pediatrician.

The Children’s Hospital of San Antonio Emergency Center – Stone Oak is open and ready to help in any emergency medical situation.

To better meet the needs of our community, The Children’s Hospital of San Antonio recently opened a freestanding emergency center in north-central San Antonio at 1434 E. Sonterra Boulevard, near Highway 281.

In 2015, we opened the city’s first freestanding children’s ER at Westover Hills located at 11130 CHRISTUS Hills, Medical Plaza 3 (located off Highway 151).

The main campus of The Children’s Hospital of San Antonio is one of the largest pediatric emergency rooms in the city. It is located at 333 North Santa Rosa Avenue in the heart of downtown San Antonio.

At The Children’s Hospital of San Antonio, we care deeply about the children in our community and want to help your child during a medical emergency. Please visit our website to learn more about our three emergency department locations.