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/

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.

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.