One Team, One Miracle, One Daughter
Devastating CDH diagnosis leads to remarkable fetal intervention
Texas Children’s Fetal Center® is one of the nation's leaders in the diagnosis and treatment of abnormalities in unborn and newborn infants. As one of only a few centers in the United States providing the full spectrum of fetal therapies, we attract parents from around the world seeking the ultimate in care for their unborn child.
For patients with moderate to severe congenital diaphragmatic hernia (CDH), we offer fetal endoscopic tracheal occlusion (FETO), a breakthrough fetal surgery with the potential to improve lung growth before birth.
Watch the video above or read the below story to see the journey of the Krese family and the care they received at Texas Children’s Fetal Center for bilateral congenital diaphragmatic hernia.
Amy and Joe Krese learned their daughter Lydia had bilateral CDH at their routine 20-week ultrasound. Most diaphragmatic hernias are left-sided, some are right-sided, and very few are bilateral, so Lydia’s condition was rare and very serious. An MRI showed her stomach and liver were both high in the chest, and her lungs were two tiny slivers.
If she made it to delivery, she would need extensive surgery after birth, and her lungs might not develop enough to allow that to happen. The Kreses were told their baby likely would not survive.
Amy, who works as a nurse at Texas Children’s, knew that her work home was the best place for her baby.
“We already trusted the doctors, nurses and staff, and we knew they would do everything possible to get the best outcome for Lydia,” says Amy. “We also had no illusions about the severity of her diagnosis, or what the treatment would entail.”
They read books on neonatal loss, and asked family not to send baby gifts. She also found an organization that would turn her wedding dress into an “angel gown” for Lydia to wear when she passed away.
Then, at 25 weeks, the Kreses were surprised to get a call from their nurse coordinator at Texas Children’s Fetal Center saying there was an experiemental procedure they wanted to perform.
With FETO, a balloon is inserted into the baby’s trachea which prevents the fluid normally produced by the lungs from escaping. This fluid accumulates in the lungs, and hopefully stimulates their growth. Normally FETO was only available for moderate to severe left-sided hernias. However, the Fetal Center team reviewed Lydia’s case and decided to offer it off-protocol as “compassionate treatment.”
“We were ecstatic to have something that might improve her chances after delivery,” remembers Amy. “We knew that there was no guarantee. But we wanted to give our baby any chance available.”
Three weeks later, Amy and Lydia underwent the procedure. Even though she lived in the Houston area, Amy moved into an apartment near the hospital in case she went into early labor while the balloons were still in place.
During her twice weekly ultrasounds, the doctors reported that Lydia’s lungs appeared to be growing. Six weeks later, an MRI confirmed it -- her lungs had grown. Amy and Lydia returned to the OR, and the balloon was removed. While her lungs had grown, they wouldn’t know if it had been enough and whether the lungs would function until after she was born. And so, the waiting continued.
“The team made me feel like I was the only patient being seen at the Fetal Center,” says Amy. “Even though my OB/GYN wasn’t on call when I went into labor, she was there. When I texted the Fetal Center medical directors on our way to the hospital at three o’clock that morning, they both texted back within a minute.”
On January 8, 2017, Lydia Julianne Krese was born and spent the next 80 days in the Level 4 NICU. At three days old, Dr. Oluyinka Olutoye repaired her diaphragm, putting her abdominal organs back where they belonged, giving her lungs room to grow.
“The neonatologists, pulmonologists, and cardiologists welcomed us into the NICU, included us in rounds, answered all our questions, and asked our thoughts,” says Amy. “The NICU nurses spent hours caring for my daughter and me while I sat at her bedside day after long, hard, lonely day.”
After 11 and a half weeks with many ups and downs, the Kreses finally took Lydia home where their son Colton was overjoyed to get to be a big brother.
“We are so grateful for all the people at Texas Children’s who not only believe in miracles, but find ways to make them happen,” says Amy.
Are you a candidate for the Moderate TOTAL Trial?
Texas Children’s Fetal Center is one of few fetal programs in the nation that has received permission from the U.S. Food and Drug Administration for the moderate TOTAL trial, a pilot study of fetal endoscopic tracheal occlusion (FETO) for moderate cases of congenital diaphragmatic hernia (CDH). Learn about the inclusion criteria for the TOTAL trial.