COLORADO SPRINGS, Colo. (KOAA) — Home videos of two-year-old Lyla Vreeke show sweet milestones all families love to capture. In one video, she is singing the song Wheels on the Bus, in another she's playing a kazoo. Mom, Kayla, cheers her on.
"You did it," Kayla said as she watches her daughter play.
But Lyla's journey to get here is nothing short of extraordinary.
"She definitely, she's a tough, tough one," said her mom Lyla Vreeke.
At their 20-week ultrasound, Lyla's parents, Kayla and Eric, found out their baby's diaphragm did not form correctly. The diagnosis: congenital diaphragmatic hernia, or CDH. It affects about 1 in 2,500 births. The life-threatening condition limits the lungs' growth and can seriously affect a baby's ability to breathe at birth.
"I could just feel like my stomach just dropped," said Kayla Vreeke. "I was just like, 'Okay, what does that mean?'"
"They can be little, small holes in the diaphragm, or very large holes in the diaphragm," said Dr. Chris Derderian. "It's really not the size of the hole that's important for CDH, it's the consequence of having that hole in the diaphragm. All the abdominal content, intestine, small bowel, colon, spleen, can come up into the chest and having that up there actually pushes against the heart and the lungs."
Children's Hospital Colorado pediatric and fetal surgeon Dr. Chris Derderian told me Lyla's case was one of the most severe. As soon as she was born, Lyla immediately had to be put on a heart lung bypass machine known as an ECMO extracorporeal membrane oxygenation.
"It's a surgery in which we put a big IV in the artery and the vein in the neck and then those two serve to take blood out of the baby, to give it oxygen, and then put it back in the baby," Derderian said.
He says delivery for babies with CDH can be chaotic. Seconds after Lyla was born by C-section, she was taken to a room next door where a team of 50 neonatal staff was ready to help.
"We were kind of in survival mode," said Kayla Vreeke. "Our goal was just to get through because we knew that acute period after birth was going to be the hardest time."
Twenty-four hours later surgeons repaired Lyla's diaphragm. She spent 86 days in the NICU, surpassing everyone's expectations, earning her the nickname "GOAT of the NICU."
Now Lyla continues to work hard to meet as many milestones as she can.
"The way it's been conveyed is she's probably not going to be an Olympic athlete from just her lung capacity overall, but all things considered, she'll live a very normal life," said Eric Vreeke.
And they credit the team at Children's Hospital for helping them to get there.
"It's like the hardest thing we've ever been through," said Kayla Vreeke. "Just have that team really meant a lot to us."
In the meantime, they're encouraging other families facing a similar diagnosis to never give up hope.
"You may get a diagnosis that you're scared of, that you don't know a lot about, but honestly your child is going to prove you wrong and just show you what they're made of," Kayla Vreeke said.
To learn more about CDH click here.
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