AUSTIN, Texas — For seven months, doctors and nurses in the Neonatal Intensive Care Unit at St. David’s Medical Center worked around the clock to care for a little girl just beginning her life.

Her mother, Sheryl Henrickson, was preparing to become a mother for the third time when she learned her unborn daughter had congenital diaphragmatic hernia, or CDH.

The condition causes a fetus’ abdominal organs to move into the chest, crowding the lungs and preventing them from developing normally. According to the National Institutes of Health, CDH affects about 2.5 out of every 10,000 births.

Henrickson recalled the moment she realized this pregnancy would be different from her first two.

“I just remember the ultrasound tech doing her routine thing. We were just chatting. All of a sudden, she became very quiet, and I just knew, my heart dropped, and I just knew something was wrong with our daughter,” she said.

As the family considered the difficult road ahead, they had to decide where their daughter would receive care.

“We were talking about moving outside of Austin to get the best care, and it became very clear to us after taking a look at the different hospitals all around, near and far, and interviewing the physicians that we had amazing care here in town, and specifically here at St. David’s,” she said.

Henrickson delivered Leni full-term on July 26, 2023, at St. David’s Medical Center. Six days later, Leni underwent diaphragmatic hernia repair surgery and spent seven months in the NICU before she was discharged.

Looking back, Henrickson said the care team became a source of support for her family.

“We just felt so supported and so cared for, and we don’t have family here. I’m grateful that we have such wonderful friends and a good social circle, but the biggest thing was the staff. I think the staff really surrounded us with such love and community and care, and they were wonderful. We feel so blessed that she is where she is today, and I think I attribute a lot of that to the care that she received early on and the ongoing care that we still get today,” she said.

Dr. Jennifer Desireddi, the family’s neonatologist, said CDH can become life-threatening immediately after delivery, which is why babies with the diagnosis need to be born at a facility that can provide advanced care.

“There’s a lot of variation in congenital diaphragmatic hernia whereby there is a hole in the diaphragm, and the intestines and other organs can sneak up into the thorax, or into the chest, and it can compress the lungs,” Desireddi said.

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Desireddi said surgery is necessary to move the organs back into the abdomen and give the lungs room to develop.

“Without that surgery, typically babies do not survive, so the condition can be life or death,” Desireddi said.

For nearly seven months, St. David’s Medical Center was where Leni fought to grow stronger and where her family found comfort in the people caring for her.

This month, they returned to the NICU for the first time since her discharge to thank the team that helped guide them through those uncertain early days.

The reunion comes during NICU Awareness Month, which recognizes the challenges faced by NICU patients and their families.

“I look back on the seven months that Leni was here with fond memories. I just feel like we were so at peace. I think I have a harder time looking back because she’s doing so well now, but when we were in it, it was joyful,” Henrickson said.