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

Our Fighting Heart Warrior

When Florencia Rivera learned she was pregnant, she knew in her heart she was having a boy. When the blood work revealed she was right, she was over the moon with excitement.

Besides being a little sleepy, her first trimester was uneventful. However, during her second trimester, Florencia and her doctors became concerned.

“I wasn’t gaining any weight. With my first child, I gained 80 pounds, and with my second baby, I gained 40,” said Florencia. “Instead of gaining weight, I was maintaining it or not gaining very much; I just knew something wasn’t right.”

Florencia’s motherly intuition was correct: The anatomy scan revealed that her baby boy had multiple heart defects. Her maternal-fetal medicine (MFM) doctor told her she needed to make an appointment with a pediatric cardiologist.

This all was happening as Texas was experiencing one of the harshest winters on record. Roads were iced-over and electricity was out for residents and businesses across the state, making it challenging to schedule medical appointments.

Finally, when she was about 24 weeks pregnant, Florencia could get in to see the pediatric cardiologist. The doctor told her that if her baby was going to need surgery, it wouldn’t be until he was between 4 and 6 years old. However, she advised Florencia to ask for an echocardiogram after the baby was born to make sure everything was OK. 

At 36 weeks and 6 days, doctors induced Florencia, she delivered her baby boy, who she named Derick Ivan. Derick was born weighing 4 pounds, 4 ounces, and 17 inches long. He was immediately taken to the neonatal intensive care unit.

As instructed by her pediatric cardiologist, Florencia asked about the echocardiogram for Derick. It revealed that Derick had three heart defects: coarctation of the aorta, aortic valve stenosis and patent ductus arteriosus.

• Coarctation of the aorta is when the tube that carries oxygen-rich blood to the rest of the body is narrower than usual.
• Critical aortic valve stenosis happens when the heart’s aortic valve narrows. When the valve doesn’t open fully, it reduces blood flow from the heart to the aorta and the rest of the body.
• Patent ductus arteriosus (PDA) is a heart defect in which a normal fetal connection between the aorta and the pulmonary artery does not close as it should after birth. PDA occurs most commonly in premature infants and often occurs with other congenital heart defects.

The doctors at a local hospital attempted to perform surgery to repair the coarctation of the aorta when Derick was 9 days old but Derick’s heart stopped beating twice – once at the beginning of the procedure and once during recovery. That is when doctors decided to transfer Derick to The Children’s Hospital of San Antonio (CHofSA) to continue his care.

Dr. Victor Bautista, a pediatric cardiologist, performed surgery on Derick when he was just 19 days old.

Upon arrival, the team at CHofSA evaluated him and learned that all his organs were in distress. Dr. Victor Bautista, a pediatric cardiothoracic surgeon, was ready to operate on Derick, but opted to wait until he was more stable. In the meantime, Derick suffered a stroke and a seizure, making an already complicated situation more complex. Dr. Bautista also discovered that Derick had a three additional heart defects; unicuspid aortic valve, atrial septal defect (ASD) and ventricular septal defect (VSD).

• The unicuspid aortic valve is a very rare congenital anomaly, which usually presents as aortic stenosis, incompetence or a combination of both. 
• An ASD is a birth defect of the heart in which there is a hole in the wall (septum) that divides the upper chambers (atria) of the heart.
• A VSD is a birth defect of the heart in which there is a hole in the wall (septum) that divides the lower chambers (ventricles) of the heart and allows blood to pass from the left to the right side of the heart.

Florencia wasn’t sure what to think about these additional defects but knew Derick was in the right place to have them taken care of. On June 11, 2021, when Derick was just 19 days old and weighed only 4.4 pounds, he underwent surgery to repair the first three heart defects and he came out like a champ.

“The team was great about keeping us up-to-date every hour on the hour,” said Florencia. “We knew what was happening every step of the way.”

Derick did so well that he did not need to go on the extracorporeal membrane oxygenation (ECMO) machine, which was a huge blessing.  Florencia remembers seeing Derick with his chest open, with tubes and wires. A wave of relief came over her and tears of joy flowed. 

“I was overwhelmed and in a state of being incredibly thankful and blessed. While it was scary to see Derick in that condition, it was a beautiful thing to witness his heart beating under his wall chest,” said Florencia. 

But Derick wasn’t out of the woods yet. He developed a condition called a chylothorax, an accumulation of lymph fluid around the lungs that made it difficult for Derick to breathe. He had to be put on a ventilator for well over a month. 

After coming off the ventilator, Florencia was hopeful that maybe Derick would take a turn for the better. Instead, he needed yet another open-heart surgery because his aorta was narrowing. This heart defect is called supravalvular aortic stenosis (SVAS) and is a type of heart defect that develops before birth. It is characterized by a narrowing (stenosis) of the section of the aorta just above the valve that connects the aorta to the heart (aortic valve).

Once again, Baby Derick came through with flying colors and was able to have a gastronomy tube inserted in preparation to go home. 

In total, Derick spent 137 days in the hospital and went home on Florencia’s birthday. During this entire time, it was extremely difficult for Florencia to leave his side but only did on most weekends to attend to her other children at home.

“I wanted him to know that I was always there and he could count on me. That way when he looked up, he always saw a familiar face and could hear a familiar voice; I thought that was very important,” said Florencia. 

Since he’s been at home, Derick has flourished. He has gained weight very well and it seems that he just blew up overnight and went from newborn clothes to 9 -12 months sizes.

Florencia is grateful for the care her son received at The Children’s Hospital of San Antonio.

As for his long-term prognosis, Derick will need another surgery down the road. For now, he takes several heart medications to keep things in check and seizure medication to keep those under control. He also takes medication for hyperthyroidism and he also has sacral dimples which go hand-in-hand with tethered cord syndrome. Tethered cord syndrome is a rare neurological condition in which the spinal cord is attached (tethered) to the surrounding tissues of the spine. Derick will have an MRI and CT scan in the near future to determine if in fact he has Tethered Cord Syndrome and if he does, doctors have told Florencia that Derick will most likely need surgery to correct it. 

Florencia and her family are incredibly grateful to CHofSA for everything they did for Derick.

 “The nurses and the doctors were all so wonderful and patient with me, teaching me everything that I needed to know in order to take care of Derick,” she said. 

During Derick’s stay at CHofSA, he and Florencia were introduced to the music therapy program. “Listening to the music was something that Derick seemed to enjoy and an activity that soothed him.” Florencia said “everyone in the hospital – from the doctors and nurses to housekeeping and maintenance – did their part to help make Derick and my stay as best as possible.” 

“Derick is such a blessing from above and having him home and being able to watch him grow from the comfort of our own home is a real gift,” she said. 

One of Florencia’s family members made a keepsake quilt for Derick. In the center is a photo of Derick’s grandmother, who has since passed away. Florencia wanted members of the CHofSA PICU team to sign the quilt and she wanted Dr. Bautista to sign it first. 

“It was just appropriate for him to be the first in line,” said Florencia. “He’s the reason why Derick is here today.” 

Derick is the true definition of what it is to be a heart warrior and thanks to the care team at CHofSA, he has faced and conquered all his diagnoses. Earlier this year, Florencia received unexpected and devastating news that Derick had liver cancer, a diagnosis that Florencia never expected to be hit with. In part 2 of this blog, Florencia will talk about how Derick has continued to fight for his life through this latest turn of events.

To learn more about Heart Care at CHofSA, please see: 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.

An unexpected miracle

For as long as she can remember, Rebekah Jowers knew it would be difficult to get pregnant. In 2017, she was diagnosed with Polycystic Ovary Syndrome (PCOS), a hormone imbalance disorder that causes small cysts to form on the ovaries. It was normal for Rebekah to skip her periods for several months or even years. If she was pregnant, a missed period wouldn’t be a clear indicator.

While Rebekah and her fiancé, Logan, were eager to start a family, they knew their dream may not happen, but they clung to hope even though they were hanging by a thread. Rebekah’s biggest dream was becoming a mom. Little did she know, things happen when least expected.

“A few days after my fiancé and I went out for dinner, I started feeling very ill,” said Rebekah. “I couldn’t keep anything down. At first, I thought I had food poisoning. When my symptoms persisted for several days, I went to the emergency room. They gave me IV fluids and a pregnancy test which I didn’t think much about. To my surprise, the nurse told me my test came back positive! I was like, ‘What? Are you sure this is right?’ And she said, ‘Yes, you are pregnant. Congratulations!’ It took me a few minutes to process what I just heard. It was a jaw dropping moment for me because I thought I could never conceive a baby. I have PCOS and the chances of me getting pregnant were slim to none. When I told Logan the news, he was as surprised as I was! It was an amazing moment for us.”

Rebekah and Logan were surprised to learn she was pregnant, but happily anticipated their baby’s arrival.

While Rebekah had frequent bouts of morning sickness during the first three months, her baby was growing and developing normally. Her obstetrician, Dr. George Cajas at the Women’s Center at Westover Hills, requested weekly ultrasound visits and her baby was very active and loved to stand up and dance in her belly.

“I love dancing so my baby picked up on that,” said Rebekah. “During my second trimester, Logan and I found out we were expecting a girl. As my pregnancy progressed, I noticed she wasn’t as active, so I went to the ER to make sure she was still breathing.  And sure enough, when we saw and heard her heartbeat on the ultrasound monitor, we knew our baby was fine. Since I’m a physically active person, the doctors told me I basically rocked my baby to sleep in my belly. I put her in a deep sleep and that is why she wasn’t moving as much. They told me to lay down in a dark room and drink lots of cold water to wake her up. Sure enough, it worked. She started moving again.”

When Rebekah was 37 weeks pregnant, she began having Braxton Hicks contractions. She was doing everything possible to alleviate the contractions. She’d walk, perform breathing exercises, and move back and forth on a bouncing ball. While it seemed to calm down the contractions, she began having more frequent contractions several days later. At 39 weeks, she was put into the hospital and labor was induced. Her nurses evaluated her progress and noticed the baby’s heart rate was dropping. Whenever Rebekah rolled over to her left side, the baby’s heart rate would go down and so would Rebekah’s blood pressure. But, when Rebekah rolled over to her right side, the baby’s heart rate would go up again, and Rebekah’s blood pressure would return to normal. Her nurses were a bit concerned and monitored Rebekah and her baby more frequently.

“My labor wasn’t progressing well,” said Rebekah. “At that point, I was given medicine to speed up my contractions. As I was going through labor, my nurses checked the ultrasound monitor and they noticed that my baby had ingested meconium (her first stool) which can lead to serious breathing problems after birth.  As a result, my obstetrician determined it was best to deliver my baby right away.  As I was being prepped for an emergency C-section, my fiancé and I were so nervous. Up until this point, I had an uneventful pregnancy. We tried to stay positive and basically roll with the punches.”

On November 12, the couple welcomed their daughter, Paisleigh, who was born at 39 weeks, and weighed 8 pounds, 4 ounces. Immediately after she was born, Paisleigh was transferred to The Children’s Hospital of San Antonio (CHofSA) since they had a level IV neonatal intensive care unit (NICU).

“As a new mother, it was heart-breaking to see my baby in an incubator hooked up to everything you could imagine,” said Rebekah. “She was on oxygen and connected to different machines. My daughter wasn’t moving, and it was hard to see her in this condition. I was glad she made it here.”

When Paisleigh arrived, she was put under the care of neonatologist Dr. Cheryl Motta and Dr. Maria Pierce, a neonatal medicine physician who provides care for infants with persistent pulmonary hypertension and those in need of extracorporeal membrane oxygenation (ECMO). CHofSA is one of the only children’s hospitals in the region providing this advanced life-saving treatment for infants.

Paisleigh was treated for meconium aspiration, which occurs when a baby ingests amniotic fluid containing meconium (baby’s first stool) into their lungs. When these particles stick to the lungs, it can prevent a baby from breathing properly resulting in respiratory distress. In Paisleigh’s case, she developed persistent pulmonary hypertension, or high blood pressure in her lungs, due to the meconium build-up which restricted the flow of blood into her lungs where it normally picks up oxygen.

Paisley was transferred to The Children’s Hospital of San Antonio Level IV NICU to receive expert care including ECMO treatment.

“When treating pulmonary hypertension, our primary goal is to increase oxygen flow to the baby’s organs to prevent further complications,” said Pierce. “Severe meconium aspiration and pulmonary hypertension can be fatal. Our team responded quickly and gave Paisleigh the care she needed. To help her lungs recover and heal, we placed her on ECMO for several days, which is a heart-lung bypass machine that takes over the baby’s heart and lung functions and delivers oxygen to the brain and other parts of the body. ECMO is the highest form of life support that can be provided to a critically ill infant. We are fortunate to have the resources available to be able to offer it here at CHofSA.”

Paisleigh spent 18 days in the NICU under the care of Drs. Maria Pierce and Cheryl Motta.

After 18 days in the NICU, Paisleigh was discharged on November 30, just weeks before Christmas, which is what Rebekah and Logan had hoped for. Rebekah says if it weren’t for the wonderful doctors and nurses who took such great care of her baby, her outcome could have been completely different.

“I had the greatest team of doctors and nurses,” said Rebekah. “They were amazing since the first day my daughter was transported to the NICU. If I had a question or concern, it was never hard to reach them. As a first-time mother, I had so many questions to ask them. I credit the NICU care team, including Dr. Pierce and Dr. Motta who were Pasleigh’s primary physicians, for saving my daughter’s life. Despite everything we’ve been through, I am grateful my baby is alive and with us.”

Today, 2-month-old Paisleigh is doing remarkably well. She can breathe on her own and acts like any other healthy baby. She is a miracle to her parents, and her personality is beginning to show.

Rebekah is grateful for the life-saving care Paisleigh received in the NICU at The Children’s Hospital of San Antonio.

Rebekah credits the ECMO program at The Children’s Hospital of San Antonio for helping her daughter survive during a critical period. The ECMO program at CHofSA is the most active, comprehensive, and experienced neonatal, pediatric, and cardiac ECMO center in South-Central Texas since 1989, providing ECMO treatment to critically ill infants and pediatric patients. Additionally, the program has been internationally recognized as an Extracorporeal Life Support Organization designated “Center of Excellence.” Click here for more information about the ECMO program at our children’s hospital.

A smile to treasure

Emily Garcia and her husband were surprised and excited about adding a fourth child to their growing family. They wanted to pick a unique name for this child and decided to name him River upon learning they would be having a boy.

“One day, I was going through a list of names and stumbled upon ‘River,'” said Emily. “I thought it was different, and it just stuck.”

No stranger to high-risk pregnancies due to her high blood pressure and gestational diabetes, Emily made an appointment with her obstetrician, Dr. Tracy Lyon at CHRISTUS Women’s Health associated with The Children’s Hospital of San Antonio (CHofSA). When Emily was about 12 weeks along, Dr. Lyon detected on the ultrasound that River’s chin was tiny and pushed back. And at the 20-week mark, they also discovered that River had a clubfoot, a birth defect that affects muscles and bones in a baby’s feet, making their foot (or both feet) point down and in.

Dr. Tracy Lyon, an OB-GYN with CHRISTUS Women’s Health, helped Emily manage her high-risk pregnancy.

“I was super emotional because I had never dealt with anything like that with my previous pregnancies,” said Emily. “But my husband and I decided to take it one day at a time and deal with whatever came our way.”

Doctors recommended that Emily undergo an amniocentesis, a procedure where a small sample of amniotic fluid is taken to be tested for any abnormalities that might have caused River’s small chin and clubfoot. Everything came back negative.

Doctors wanted to keep a close eye on River and scheduled weekly ultrasounds for Emily to check on his progress.

The remainder of Emily’s pregnancy was uneventful until she hit 35 weeks and started feeling a little “off” and suspected that her blood pressure was high. She decided to take it, and sure enough, it was. She waited an hour or so to see if her medicine made a difference and when it didn’t, she called her doctor.

After doctors put her on a different medication and placed an IV, Emily’s blood pressure was still elevated. So, the doctors prepared her for a C-section.  

Once they delivered River, doctors discovered that in addition to the small chin and clubfoot, he also had a cleft palate, a condition where the roof of the mouth does not fuse completely during pregnancy.

“The doctors attending River’s delivery were super concerned about him, so they took him to the neonatal intensive care unit (NICU) immediately after he was born,” said Emily.

Because Emily was given magnesium to help her recover from her C-section, she could not see River right away.

When she finally did get to see River, he was doing well. He could breathe on his own, which was a good sign. Dr. Maria Pierce, River’s primary physician in the NICU, told Emily that as he grew, River’s need for supplemental oxygen may increase, which it eventually did.

When Emily finally got to see River in the NICU, he was receiving oxygen and breathing on his own.

As with most NICU babies, River’s journey in the NICU was somewhat of a rollercoaster, but through it all, the team at CHofSA kept Emily, and her husband updated every step of the way.

“I had a lot of communication with Dr. Pierce and some of the other physicians. They were always so helpful and understanding. It was a constant ‘two steps forward, one step backward’ scenario,” said Emily.

River was having some issues eating and, as a result, had trouble gaining weight. When he would try to eat, his heart rate would drop, which was somewhat concerning. After the speech pathologist conducting a swallow test, together with River’s doctors they pinpointed precisely what he needed to help him eat.

When he was about six weeks old and after he had gained some weight, River reached the point where he could have his jaw distraction surgery. Dr. Alejandra Garcia de Mitchell, his plastic surgeon, and her team carefully positioned plates in his jaw and little pins behind his ears. Every day, the doctors would turn the pins to help push his jaw forward.

“In a side-by-side comparison of what River looked like before surgery and what he looked like afterward, it was an amazing transformation,” said Emily. “He looks like a completely different baby.”

River spent 70 days in the NICU and enjoyed visits with his mom and dad.

In total, River spent 70 days in the NICU at CHofSA.

As for his clubfoot, Dr. Elizabeth Magnabosco, an orthopedic surgeon with Baylor College of Medicine at CHofSA, is treating it with ‘casting’ and his foot has slowly started to turn in the correct position.  Dr. Magnabosco is also using the “boots and bars” mechanism, where boots and bars are used to stabilize the muscles and ligaments and prevent them from tightening up.

Born with a club foot, doctors at The Children’s Hospital fitted River with the “boots and bars” mechanism that will gradually correct the position of his foot as he grows.

When River finally was able to go home, Emily and her husband were excited but also a bit overwhelmed. Before they left the hospital, they needed to know everything necessary to care for River at home. And they needed to be prepared to keep track of his many doctor’s appointments, including setting up physical therapy for his foot and face. He also needed to have the distractors removed, a procedure he recently had done.

Emily and her family are immensely grateful to the team at CHofSA for taking such great care of River, especially the plastic surgery team.

“The plastic surgery team made my life 10 times better. He’s able to do so much more than I ever thought he’d be able to do because of them,” said Emily. “They brightened the outlook for my son and increased his quality of life.”

The nursing team also made a significant impact on River and his family. There are two in particular that come to mind – Kim and Alison.

“Kim went above and beyond for us as far as River was concerned. She always took care of us and made sure we always knew what was going on,” said Emily. “And Alison took care of River during the night and was super helpful in making sure he was always fed, which could be complicated at times.”

The only surgery ahead of him is the procedures to correct his cleft palate. When he is a little older, Dr. Garcia de Mitchell will perform the surgery to repair his cleft palate in two stages. The first stage will be to correct his soft palate when he is about a year old, and the second phase to correct his hard palate will occur when he’s between 15 and 18 months old.

In the meantime, River is reaching some key milestones. He loves to be held, enjoys his swing, and has started to smile and even talk a little.

“There were times when I wasn’t sure we would ever see him smile,” said Emily. “Now, when he does, it means the world to me.”  

Services mentioned in this blog: Orthopedics, NICU, CHRISTUS Women’s Health, Plastic Surgery

Defying Medicine. Defining Hope.

Xochitl and Brian Scott were looking forward to adding to their growing family. The couple had children from previous relationships but not one together, so they were overjoyed when they learned Xochitl was pregnant.

“I had done everything under the moon and stars to get pregnant. It was so surreal for me that it was really happening,” remembers Xochitl.

Because she had experienced two previous miscarriages, Xochitl was understandably nervous during her first trimester. As a paramedic, she found herself overly anxious because she had witnessed countless times how quickly life could change.

“I was just so worried and prayed a lot and I cried over everything,” said Xochitl. “I even cried over a bag of Doritos. And, my cravings were crazy. I had to have Texas BBQ which was not something I was a fan of before at all.”

To help keep things in check, her doctors put Xochitl on a weekly dose of progesterone, which seemed to work until Xochitl began experiencing excruciating abdominal pains one day. The progesterone pills affected her kidneys so that her blood was not being filtered. Her body had become toxic.

She was about 17 weeks along at this point and was worried that if she continued taking the progesterone pills, she would lose her baby. Xochitl and Brian hoped and prayed for the best. Their prayers were answered as things progressed, and the fear of miscarriage slowly dissipated.

The couple’s dream of having a child together began to take more shape until they hit another bump in the road. Xochitl learned she had both gestational diabetes and was high blood pressure.

Wondering how these two conditions might affect her pregnancy, Xochitl had an ultrasound when she was about 20 weeks along. After having her test done, she left, and within 30 minutes, her doctor called and asked her to come back to the office.

Xochitl worked as a paramedic up until the 30th week of her pregnancy. She was ordered to go on bed rest due to complications from high blood pressure.

“My heart stopped. I was terrified. I thought they were going to tell me that I had lost my baby or that they couldn’t find the baby’s heartbeat,” said Xochitl.

It turned out to be none of those things. Instead, Xochitl and Brian’s baby had a condition known as omphalocele, a congenital disability of the abdominal wall. It’s when an infant’s intestines, liver, or other organs protrude outside of the belly through the belly button. Xochitl immediately began questioning whether she had done something to cause this.

“The paramedic in me came out. I’m supposed to make everything okay; my job is to make everyone feel better. I felt like I had failed,” said Xochitl.

She was referred to Dr. Theresa Stewart, a high-risk OB at the Center for Maternal and Fetal Care – New Braunfels, which is part of The Children’s Hospital of San Antonio.  

“She was such an amazing person and made sure that I did everything I was supposed to do,” said Xochitl. “She was on top of everything and made me feel so wonderful and gave me lots of hope. The whole staff are so dear to my heart from the desk office to the ladies that would to the sonogram. They became like a family to me.”

Xochitl’s diagnosis of gestational diabetes and hypertension, in addition to the baby’s condition, was just too much to bear. So much was happening that they did not find out until the second ultrasound if they were having a boy or a girl.

“At that point, I didn’t care if the baby was a boy or a girl,” said Xochitl. “I just wanted the baby to be as healthy as possible.”

As it turns out, Xochitl was pregnant with a little girl they would name Lilly.

Dr. Stewart told Xochitl that she would need to arrange to deliver at a children’s hospital because of baby Lilly’s omphalocele. Xochitl knew exactly where they wanted to go: The Children’s Hospital of San Antonio (CHofSA.) Soon after birth, Lilly would need multiple surgeries to correct the omphalocele and access to a neonatal intensive care unit (NICU).

Xochitl and Brian were excited to welcome a new baby into their family. Xochitl experienced several setbacks to her own health during her pregnancy and also learned the baby would need surgery soon after delivery.

During her third trimester, Xochitl began going to specialists weekly to have her blood sugar levels checked. One day at work, when she was about 30 weeks along, Xochitl didn’t feel right and thought it would be wise to take her blood pressure. It was sky high. The next thing she remembers, doctors and nurses were swarming around her, and transported her to the hospital.

Dr. Stewart determined Xochitl had preeclampsia, a condition in pregnant women marked by high blood pressure that can damage the liver and kidneys.

Despite everything swirling around them, Xochitl and Brian remained strong in their faith and counted their blessings.

“We tried to focus on the positive and surrounded ourselves with our other children,” said Brian. “They brought us lots of laughter and a ton of love. That helped.”

The diagnosis of preeclampsia called for strict orders for Xochitl to go on bed rest, which proved to be quite challenging for the active mom, but she knew what she had to do for Lilly. She and Brian took a short vacation, and she also stopped working – all steps to ensure Lilly had the best possible outcome. That was the middle of August.

On September 15, Xochitl had what she thought would be a regular appointment with a specialist, but she was experiencing painful contractions and was bleeding. At 37 weeks, Xochitl was going into labor, which she was unprepared for, and began panicking.

“I kept thinking this is way too early for her – she hasn’t fully developed yet. I knew she needed to be in the womb as long as possible to help her recuperate from her surgery and only have minimal complications. I wasn’t ready,” said Xochitl.

Ready or not, though, baby Lilly was coming. Xochitl was prepped for a C-section that same day, and Lilly made her arrival into the world.  

At just 1-day-old, Lilly underwent surgery to correct a condition known as omphalocele that caused her organs to protrude through her umbilical cord.

In addition to the omphalocele, Lilly was born with a few other complications. Her left arm did not fully grow and was underdeveloped, and she didn’t have a pinkie or thumb. One side of her mouth drooped because a tendon was missing.

It felt like an eternity between the time Xochitl gave birth to when she got to see Lilly. And when she did get to see her finally, Xochitl was heartbroken. Watching her newborn with a central line and IVs was difficult to see.

Because Lilly’s lungs were in good condition and her stomach was intact, the doctors at CHofSA were planning to do surgery on September 16 – the day after she was born.

“I was happy because my baby was born. At the same time, I was nervous about what was happening with my baby and feeling scared, too,” recalls Xochitl.

Dr. Katherine Barness, who serves as Chief of Surgery at CHofSA, did the surgery and afterward shared the amazing news with Xochitl and Brian: Lilly’s surgery was successful – so successful that she would only need one surgery instead of multiple ones to correct the omphalocele. At the beginning of their journey, Xochitl and Brian were told that there was only about a 5% chance of this happening.

From there, Lilly made an amazing recovery. Soon after her surgery, Lilly started eating – something entirely unexpected. Her heart looked good, her oxygen levels were up, and she rapidly began to gain weight. When they first started on their journey, Xochitl and Brian were prepared for Lilly to spend two and a half months in the NICU, but as it turned out, she was only there for two weeks.

“We weren’t quite prepared to go home so soon. Sometimes babies with omphalocele require special equipment designed just for them like cribs, chairs, and car seats,” said Brian. “She ended up not needing any of it.”

In Xochitl’s mind, Lilly defied medicine and defines hope.

Today, Lilly is doing well and is showered with love and attention by her siblings. She eats regularly, likes to swing, and loves cuddle time. Xochitl is so grateful to her friends and family who provided tremendous support during her journey.

Baby Lilly is thriving after her surgery and enjoys getting lots of attention from her older siblings.

“Lilly is hope, Hope that miracles can happen. She inspires us and shows us that the impossible can be conquered. I stare at her and realize we are so blessed. We are thankful and so grateful to all the NICU nurses that took care of Lilly, especially Dr. Katherine Barness and Dr. Maria Pierce,” said Xochitl. “We would have been lost without their kindness, care, support, and wonderful sense of humor. I wish I could take what I have in my heart and physically show how thankful we are. I don’t think words can express what we feel. They have made a difference and changed more than one life. Thank you for giving us our miracle and for giving my family our Lilly,” she said.

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