Defying Medicine. Defining Hope.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tickled Pink

Lafeesha and Aaron Saul were ready to add to their family of four, so when they learned Lafeesha was pregnant, it was welcomed news. With two boys – one 8 and the other 10 – they were excited about the prospect of bringing a newborn home.

Other than feeling tired and nauseous, Lafeesha’s first trimester was uneventful. However, at the end of her first three months, Lafeesha learned she had gestational diabetes, a diagnosis that can be harmful to a developing baby. In addition, doctors detected some extra fluid at the base of the baby’s neck and the top of the spine. So, erring on the side of caution, they decided to do some additional tests.

During these additional tests, Lafeesha and Aaron learned they were having a girl, who they would later name Necoah. The entire family rejoiced.

“Secretly, I was hoping we would be having a little girl,” said Lafeesha. “Both of my older kids have been asking for a baby sister since they were 2 or 3 years old. So, we were tickled pink.”

The happy news about having a girl was mixed with some concerning information: the tests revealed a potential problem with Necoah’s heart and bowels.

Lafeesha entered her second trimester, where doctors performed an anatomy scan on Necoah.

“She had 10 fingers and 10 toes,” said Lefeesha. “But we were all concerned about her bowels because they were coming up brighter on the screen, and she also continued to have that extra fluid at the base of her neck. In addition, a vein was coming from the back of her heart – an indication that something just wasn’t right.”

Because of these red flags, Lafeesha’s maternal-fetal medicine doctor at The Center for Maternal and Fetal care – Westover Hills recommended that she deliver Necoah at The Children’s Hospital of San Antonio (CHofSA) where she would be close to a Level IV neonatal intensive care unit (NICU), where doctors and nurses offer the highest level of care to the sickest newborns.

Lafeesha entered her third trimester and went to weekly doctor appointments to make sure everything was OK with Necoah. Finally, when Lefeesha was about 35 weeks along, Necoah decided it was time to make her entrance into the world. Necoah’s heart rate was rising and Lafeesha was making little or no progress when it came to contractions, and she was not dilating at all.

On July 10, 2021, Lafeesha underwent an emergency C-section. She remembers seeing her baby girl only for a split second, and then Necoah had to be whisked away to the NICU.

That evening, Lafeesha met Necoah for the first time and remembers the union being what she described as “bittersweet.”

Seeing Necoah for the first time in the NICU was bittersweet and heartbreaking for Lafeesha.

“It was wonderful to see that I had brought another child into the world, but at the same time, it was heartbreaking to see her on a ventilator with a bunch of wires and tubes,” said Lafeesha. “I couldn’t hold her or anything. She was so tiny – just a little over 5 pounds. But she had survived, and I knew we were in the right place for her to get the help she needed.”

Meanwhile, Lafeesha was recovering from her C-section, a procedure she had not gone through when she had her other children. She says the nurses at CHofSA were patient and kind, offering her tips on how to get out bed and walk.

During the first few days in the NICU, there were at least four or five doctors surrounding Necoah at any given time. After further evaluation and putting her on some medication, they determined that she definitely had a heart defect, but she likely would be OK with some medication and time. Lafeesha and Aaron thought the heart issue was the extent of it.

It wasn’t until another week or so in the NICU that Necoah’s doctors discovered she had a condition known as a congenital diaphragmatic hernia (CDH). A rare condition in newborns, CDH happens when a hole in the diaphragm allows the intestines, liver, and abdominal organs to enter the chest and impact normal lung development.

Little Necoah had a long way to go. She had developed some hypertension, was still on a ventilator, and getting fluids through an IV. While her hernia was not as bad as it could be, the doctors were still concerned that it could put added stress on her heart, so they observed it and told Lafeesha and Aaron that their little girl would eventually need an operation to correct the defect.

“While it was hard to hear that Necoah would eventually need to have surgery, I had the highest level of confidence that the team at CHofSA knew what they were doing. They were all pretty great at letting us know exactly what was going on and what they wanted to do,” said Lafeesha. “We were never in the dark, and this was something we greatly appreciated.”

When Necoah was about a month old, she had the surgery. Lafeesha had numerous conversations with the surgeon, Dr. John Doski about the procedure, which put her at ease. Dr. Doski walked her step-by-step what would happen and when.

Necoah’s surgery was a success. While she went back on a ventilator, it was only for a few days until they got her on a feeding tube and oxygen only through a cannula.

Lafeesha’s little girl was turning a corner. However, despite her forward progress, she didn’t have any interest in taking a bottle, so about a month later, she had a gastrostomy or G-tube placed to make sure she was getting adequate nutrition.

From there, Necoah continued to make progress and eventually was released to go home in early October. She had been in the NICU for three months.

After three months in the hospital, the whole family was grateful to have little Necoah home with them.

When she looks back at her experience at CHofSA, Lafeesha is immensely grateful for all they did for her and her daughter. She was particularly thankful to a woman named Gail, who took care of Necoah when Lafeesha could not be there, especially when the rest of the family came down with COVID-19 and Lafeesha had to quarantine.

“Gail made sure Necoah’s clothes were washed and brought toys to her and even did some tummy time with her,” said Lafeesha. “She looked after Necoah as if she were her own child.”

Lafeesha also was impressed by the doctors, Dr. Maria Pierce and Dr. Sowyma Mohan. She said both were great women and excellent doctors – easy to communicate with and highly compassionate.

“I would like to thank them for all of their hard work, for communicating with me, and always being honest. They were so great about calling us every single day and making sure we were informed. Everyone on the team was in alignment with us, and it was awesome.”

Neocoah’s big brothers keep a close watch on their little sister.

Today, Necoah loves being showered with love and attention by her older brothers. She’s smiling and learning to laugh. Despite being in the NICU for a long time, Lafeesha says she seems like a happy, healthy baby.

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