You’ve Been Diagnosed with Preeclampsia: Now What?

Q&A with Dr. Emma Rodriguez, maternal fetal medicine specialist

Preeclampsia is a serious health problem for pregnant women around the world. It is one of the more common pregnancy complications, affecting about 5 to 8 percent of pregnant women in the U.S. It is also the leading cause of premature birth, contributing to 15 percent of all premature deliveries in the U.S.

The disease is sometimes referred to as a silent killer because most pregnant women can’t “feel” their blood pressure going up. As a result, patient awareness of the early warning signs is one of the most important tools around to successfully help pregnant women receive the immediate care they need.

So, what exactly is preeclampsia, and how can it be managed effectively? We recently sat down with Dr. Emma Rodriguez to talk about preeclampsia and what women need to know.

Dr. Emma Rodriguez is a maternal fetal medicine specialist with The Children’s Hospital of San Antonio. She helps her patients manage high-risk pregnancies when they develop conditions like preeclampsia.

What is preeclampsia? What symptoms should I be looking out for?
Preeclampsia is a serious medical condition characterized by high blood pressure that can happen after the 20^th week of pregnancy or after giving birth (called postpartum preeclampsia). Symptoms include high blood pressure, protein in urine, swelling, headaches and blurred vision. This condition needs to be treated by a health-care provider. If left untreated, preeclampsia can endanger the health of the mom and her unborn baby. In the most severe cases, preeclampsia can cause organ failure and even death.

How is preeclampsia diagnosed?
Preeclampsia is diagnosed by measuring a woman’s blood pressure and conducting routine urine tests during prenatal visits. The purpose of the urine test is to see if there is protein in the urine, which can indicate a kidney problem. If the blood pressure reading is high (more than 140/90), especially after the 20^th week of pregnancy, and there is protein in the urine, a diagnosis of preeclampsia is made. To determine the severity of the diagnosis, more extensive lab tests may be ordered, including blood tests to evaluate the level of platelets in the blood and to test for abnormally high levels of serum creatinine and liver enzymes in the blood that may suggest impaired kidney and liver function.

Pulmonary edema (excess fluid in the lungs) is another symptom of severe preeclampsia that may present as shortness of breath.

What is the typical medication/treatment for a pregnant woman with preeclampsia?
Treatment during pregnancy will depend on the severity of a patient’s high blood pressure and the health of her and her unborn baby. In general, prenatal care may include frequent prenatal visits, close monitoring of blood pressure, adjustments to blood pressure medications as needed, and regular maternal blood testing to check for signs of the condition worsening. In mild cases, patients are monitored more closely as previously mentioned.  In severe cases of preeclampsia, treatment may include giving anticonvulsant medications to prevent seizures, corticosteroids to speed up the baby’s lung development and early delivery may be indicated.

What are some common risk factors associated with preeclampsia?
There are certain risk factors that predispose a woman to develop preeclampsia. First, if you had it before with another pregnancy, the likelihood of you developing it again is greater. Also, if you have chronic (pre-existing) hypertension, are pregnant with more than one baby, or have underlying health conditions like type 1 or type 2 diabetes, kidney disease or certain autoimmune diseases, you may be at higher-than-average risk for preeclampsia during pregnancy. Other risk factors include being African American, having a family history of preeclampsia, or having a body mass index (BMI) of 30 or higher.

How can you prevent and/or reduce your risk of developing this condition?
As with most pregnancy-related complications, the best way to prevent preeclampsia is to keep up on all your prenatal appointments, and let your doctor know if you are experiencing any unusual symptoms that need attention. Other ways to decrease your preeclampsia risk is to eat healthy, exercise, and maintain a healthy weight. That means staying away from sugary and processed foods and eating more nutrient dense foods including high-fiber fruits and vegetables, lean proteins, whole grains and dairy. Also, incorporating exercise into your daily routine, like taking a 30-minute walk during the day, will also help. You should consult your doctor about how much exercise you should be getting. For high-risk women, taking a low-dose aspirin (81 mg) daily after 12 weeks of pregnancy may reduce their risk of preeclampsia. Before taking any medications during your pregnancy, check with your doctor first.

What causes preeclampsia?
No one knows for sure what causes preeclampsia, although experts believe it begins in the placenta as your body amps up your blood production to support your growing baby. A decreased blood supply to the placenta in some women may lead to preeclampsia. The genetic makeup of a fetus could predispose a pregnancy to preeclampsia. Because a family history also increases the risk, your own genetics may play a role as well. 

How can you manage preeclampsia during pregnancy?
If a woman has been diagnosed with preeclampsia, it is important for them to get plenty of rest and to take prescribed medications to manage their blood pressure. It’s also important to go to regular prenatal visits for close blood pressure monitoring and weekly labs to make sure the preeclampsia hasn’t gotten any worse. Frequent ultrasounds to monitor amniotic fluid and baby’s growth are also very important. Slow fetal growth is often associated with preeclampsia.  

How does preeclampsia affect pregnancy and the baby?
Preeclampsia is one of the most common causes of premature births. Unmanaged preeclampsia can prevent a developing fetus from getting enough blood and oxygen and damage a mother’s liver and kidneys. In rare cases, untreated preeclampsia can progress to eclampsia, a much more serious condition involving seizures, or HELLP syndrome, another serious condition that can lead to liver damage and other complications. Additionally, if the condition is not monitored closely and treated promptly, it can also cause the placenta to suddenly separate from the uterus (called placental abruption), which can lead to serious pregnancy complications and death.

If you have preeclampsia, can you carry your baby to full term?
It depends. Your doctor will determine when to deliver based on how far along your baby is, how well your baby is doing in your womb, and the severity of your preeclampsia. If your baby has developed well and preeclampsia is mild, delivery at 37 weeks is recommended.  In severe cases of preeclampsia, or if there is evidence of worsening disease, preterm delivery may be indicated. Your doctor may want to induce labor or do a cesarean section to keep preeclampsia from getting worse. The only cure for preeclampsia is to give birth.

Do preeclampsia symptoms go away after your baby is born?
The symptoms of preeclampsia usually go away within six weeks after delivery. In some women, the symptoms stop almost immediately after birth. However, in others, high blood pressure sometimes gets worse the first few days after delivery. Even if you were not diagnosed with preeclampsia before delivery, you are still at risk for preeclampsia for up to six weeks after delivery.

In a previous blog, expectant mom Vanessa shared her experience with preeclampsia that led to the premature birth of her daughter Luna.

Xochitl Scott developed preeclampsia during her pregnancy. She and her husband leaned on their faith and the expertise of doctors at The Children’s Hospital of San Antonio. Xochitl shared her story with us in January 2022.

If you have received a diagnosis of preeclampsia and would like to make an appointment with one of our high-risk pregnancy experts, please visit: Center for Maternal and Fetal Care.

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.

Twins with Autism Benefit from Therapy and Mom’s Boundless Love

Alisha’s twin sons Xander and Royal were diagnosed with autism when they were 4 years old. Today, they are 11 and thriving with the help of their devoted mom, behavioral therapists, and Dr. Andrew Martinez, a psychologist and program director at the Comprehensive Autism Program at The Children’s Hospital of San Antonio. We asked Alisha to share her experience through the following Q&A.  

When and how did you first find out about your children’s diagnosis?  I noticed significant delays in developmental milestones and behaviors with my twins at a very young age. Speech, smiling, eating, and drinking were minimal to nonexistent. They also displayed daily, repetitive unique, rhythmic mannerisms, motions, and patterns. Those were some of the cues that gave me enough concern to suspect the twins may have autism.

The love I had for my boys outweighed any fear I had of a diagnosis. Whatever it might be, I needed help and information. So I took the initiative to ask their primary care provider for an evaluation for autism spectrum disorder. Without pause, I received the referral for both boys to be seen and evaluated by Dr. Martinez. After testing, he confirmed the diagnosis. Both twins had autism. Each child was sitting at their own spot on the spectrum. They each had their own set of strengths, gifts, and challenges. That is where our journey began. 

As twins, Royal and Xander share everything including a diagnosis of autism. Both boys now thrive with the help of Applied Behavioral Analysis therapy.

Describe your treatment plan. Why did you choose this treatment plan?    Royal and Xander both receive one-on-one Applied Behavioral Analysis (ABA) therapy. I chose this specialized therapy because they each have a personalized treatment plan specifically outlined for them. The goals for my children are carefully planned and written out by a program manager, then reviewed and approved by their doctor. My input as an involved parent is always incorporated into their treatment. ABA therapy can be hard, it is work, but that is precisely why I wanted my boys to have it. ABA therapy is the gold standard of care for any child on the autism spectrum. The payoff has been incredible for our family. 

Dr. Andrew Martinez is the Autism Program Director at The Children’s Hospital of San Antonio. He provided the evaluation and diagnosis of autism for Xander and Royal when they were 4 years old.

What has your experience been like with The Children’s Hospital of San Antonio Autism Program? My experience at the CHofSA Autism Clinic has been nothing but positive, informative, and helpful.  Royal and Xander are almost 11 years old now. It is hard to put into words the change in my boys since they have been in care. There have been remarkable improvements all the way around. Speech. Behavior. Demeanor. Understanding. Social interaction. Everything. Had I not reached out to the clinic for help, none of this would have been possible. 

What would you tell other families who have just received a diagnosis?   When my little twins were officially diagnosed, I was confused, frustrated, and scared. You may be feeling all of this and much more. Try to take comfort in knowing this. Now that you know, you can do something about it. There is so much power in information! The help, peace, and clarity you are seeking for yourself all come with this diagnosis. The number of helpful resources available to you and your family is endless. The heights your child can reach are limitless. The love and support your child receives at home counts more than anything else.  

Alisha was overwhelmed with fear when she first received a diagnosis that her twin sons were autistic. But along with the diagnosis she received information and resources that put the boys on track to learn and develop.

 Anything else you would like to add?   The love I have for Royal and Xander is boundless. That is why I will always be their voice and their most fierce advocate. In all things, I have been and will continue to be the voice for other children and families in need of a helping hand as well. Royal and Xander are not only twin brothers. They are best friends. Where one is weak, the other is strong. Most importantly, they both know Mama is right there to pick up any slack when necessary. 

If you need more information about autism, talk to your child’s pediatrician and request a referral for an autism evaluation.