Heart Full of Hope

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Recognizing Black Maternal Health Week

According to the Centers for Disease Control and Prevention, approximately 700 women die each year in the United States because of pregnancy or delivery complications. In 2020, Black women were by far the most disproportionately affected with a mortality rate of 55.3 deaths per 100,000 live births, compared to 19.1 deaths per 100,000 live births, and 18.2 deaths per 100,000 live births for White and Hispanic women, respectively.

Black women in the U.S. are more likely to die from pregnancy related complications. The team at The Children’s Hospital of San Antonio trains other medical teams around the state to help them be prepared for emergencies during labor and delivery.

We hope you will join us as we celebrate the fifth anniversary of Black Maternal Health Week and the movement to change the state of black maternal health. Founded and led by the Black Mamas Matter Alliance is an exciting week of activism, awareness, and community-building.

At The Children’s Hospital of San Antonio (CHofSA), we emphasize innovative programs to make sure our Black patients have a safe and healthy pregnancy, delivery and postpartum recovery. It starts with education and the team at CHofSA is taking the lead to train hospitals across Texas through hands-on simulation programs where our physicians, nurses and the entire care team can practice for critical obstetric emergencies together on their own labor and delivery units. In collaboration with the Texas Alliance for Innovation on Maternal Health (AIM) initiative we have helped to train hospitals across all of Texas on how to run simulation drills on their units. 

These learning sessions pair the multi-disciplinary improvement teams from each participating hospital and expert faculty to exchange ideas about challenges facing our black mothers. The learning sessions include time for each hospital’s team to work together to integrate learning and plan for how to immediately incorporate simulation into their improvement processes.

Currently, 98% of the medical staff at CHofSA and 100% of the nursing staff have participated in both a post-partum hemorrhage and a hypertension emergency simulation. This has greatly decreased the team’s reaction time and increased the team’s performance in responding to these emergencies. Through conducting debriefs after actual events, the staff works to continuously improve and decrease the number of severe morbidity and mortality events.

To learn more about how the simulation program is improving maternal outcomes for our moms, please see: https://www.aha.org/system/files/media/file/2022/03/members-in-action-childrens-hospital-of-san-antonio-case-study.pdf

A Story of Faith, Hope and Survival

Last August, Cynthia and Isaac Torres from Eagle Pass, Texas, were excited when they found out they were expecting another baby. The couple has a 13-year-old son, but they always wanted to have more children. After several miscarriages, they were unsure if another baby was possible. As they clung to their faith, God doubled their blessings in ways they never imagined.

“Early in my pregnancy, my ultrasounds showed I was carrying one baby,” said Cynthia. “When I was 13 weeks pregnant, I had another ultrasound, and I will never forget that day. Just like any other prenatal appointment, I went in for an anatomy scan to see how my baby was developing and I remember the technician telling me, ‘I see two babies. You are pregnant with twins.’ My immediate reaction was, ‘Are you serious?’ When she turned the monitor towards me, sure enough, I saw two tiny hearts beating in unison. My husband and I were beyond excited.”

Cynthia began seeing two OB-GYN specialists – Dr. Carlos Hernandez in Eagle Pass and Dr. James Hill, her high-risk maternal fetal medicine physician at The Children’s Hospital of San Antonio. Since Cynthia was pregnant with twins and she had a previous history of miscarriages, she and her babies were monitored closely. Cynthia had to take daily injections of Enoxaparin, a blood-thinning medication to prevent recurrent miscarriages. She gave herself these injections throughout her entire pregnancy. During her first and second trimesters, her pregnancy was going smoothly, and the babies were developing normally.

When Cynthia was 31-weeks pregnant, she went on a family vacation to Mazatlan, Mexico, with her husband, their 13-year-old son, and her mother in December 2021. They enjoyed the beach and wanted to have one last family vacation before the babies were due on March 1, 2022. After spending nearly a week in Mexico, the unexpected happened on the last day of their vacation.

“My family was packing our luggage since we were heading home the next day,” said Cynthia. “I was laying on the couch in our hotel room, and I remember screaming. My mom asked me what was wrong. I told her I didn’t know. I just got this bad pain. And when I got up, my water broke. Since I was considered high risk, I went to the hospital which was a short drive from our hotel. I was hoping that I could still make it back home the next day, but that wasn’t the case. When I arrived in the ER at Mazatlan, I had an ultrasound to see if my babies were OK. Then, the gynecologist who examined me performed another ultrasound. He told me there was not enough amniotic fluid in the sac, and it was dangerous for the babies to remain in my womb.”

On January 2, 2022, Cynthia and Isaac welcomed their fraternal twins – Isaac and Israel – who were delivered via emergency cesarean section in Mexico. They were born at 31 weeks and weighed just three pounds each. Isaac was born first, and was smaller than his younger brother, Israel. Soon after their births, Isaac and Israel were sent to the neonatal intensive care unit where they were monitored.

“It was a big sigh of relief when I heard my babies cry for the first time,” said Cynthia. “As much as I wanted to hold them closely, I couldn’t because I tested positive for COVID-19. This was my second time having COVID, but in both cases, I had mild symptoms. I was quarantined at the hospital and nobody in my family could see me. I remember crying and feeling so alone. I had my cell phone with me so my husband could text me pictures of Israel and Isaac in the NICU.”

Since the twins were born premature, Israel and Isaac were having trouble breathing. They were both hooked up to oxygen, but Israel’s lung condition seemed to be getting worse. The NICU doctors in Mazatlan told the Torres’ that it would be best for Israel and Isaac to be transferred to The Children’s Hospital of San Antonio since they have a Level IV NICU that provides the highest level of care for premature and critically ill newborns. Once the babies arrived, they would be placed under the care of Dr. Maria Pierce, a perinatal-neonatal medicine physician and medical director of the hospital’s NICU.

A transport team loads the Torres twins onto an airplane in Mazatlan, Mexico, to bring the twins to The Children’s Hospital of San Antonio’s Level IV NICU.

“Dr. Pierce was an angel sent from above,” said Cynthia. “My husband called her from Mexico, and she told us there was space for our boys in the NICU. As nervous as we were, my husband got the paperwork completed for the air transport of our twins. He accompanied our sons on the two-hour airplane ride to San Antonio. They arrived at Children’s Hospital on January 5 at 2:00 a.m. Dr. Pierce and the rest of the team were already waiting for Israel and Isaac to get to the NICU.”

When the babies arrived at Children’s, they both needed oxygen. Israel, the weaker twin,went into cardiac arrest as they arrived to the NICU. The NICU team performed CPR on Israel, and they were able to resuscitate him within minutes. Both babies were stable, but they were not out of the woods. Dr. Pierce and the NICU nurses monitored them closely and updated the family on their progress.

Isaac Torres flew with the twins to San Antonio and stayed with them during their first two weeks in the NICU while his wife recovered from COVID.

“Dr. Pierce called me in Mexico to let me know how my twins were doing,” said Cynthia. “I spent two nights in the hospital in Mexico before I could go back to Texas. My son, mom and I made the 12-hour drive to Eagle Pass. It was a long ride for me as I was still recovering from my C-section. Since I had COVID and had to be quarantined at home, my husband stayed with our twins for the first 10 days in the NICU. When I finally held Isaac and Israel for the first time, I cried. It was a beautiful thing to be reunited with my sons. It was the best feeling in the world.”

Cynthia cried tears of joy when she was finally able to hold her babies for the first time since they were born.

While in the NICU, Israel and Isaac were monitored and tested daily. They underwent many different screening tests including MRIs on their brains and lungs to make sure everything was functioning normally. Although they had low iron levels, which is not uncommon in premature babies, they were given vitamins twice a day. While they had feeding tubes, they were receiving bottle feeds as well, and they gained weight in the NICU. Isaac and Israel were getting stronger day by day and were able to breathe on their own. Once they were completely stable, they were ready to go home on February 12, 2022, after spending a month and a half in the NICU.

Isaac and Israel spent six weeks in the NICU at The Children’s Hospital of San Antonio. Their parents are happy to be back home in Eagle Pass now where the twins are thriving and mom enjoys dressing them up in matching outfits!

“Our 2-month-old sons are doing amazingly well,” said Cynthia. “Their little personalities are beginning to show. While Isaac loves to command attention – he thinks he’s the center of the world – his younger brother Israel loves to be held all the time. He is more patient than his older brother. As I look at our sons today, I can’t help but think about their journey of survival, and the amazing doctors and nurses in the NICU who took great care of them. Dr. Pierce and the NICU nurses were amazing. They answered all of our questions and concerns, and they were always there to comfort and support us especially during those unstable moments when I wasn’t sure what the outcome would be. There were a lot of ups and downs on our journey, but our family and faith kept us strong. I’d go to the chapel at the hospital and pray for our boys every day. I can’t wait to tell my boys the story about their birth when they get older. It was a wild ride – but in the end, I am grateful God blessed us with these two miracle babies that we love so much.”

The Children’s Hospital of San Antonio provides the highest level of specialized care for premature and critically ill infants. Click here to learn more about our Level IV NICU.