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Family shares newborn's CHAOS birth defect story to educate others

chaos syndrome
Posted at 11:05 AM, Sep 09, 2021
and last updated 2021-09-09 13:06:09-04

AURORA, Colo. — Giving birth can certainly come with obstacles, some that are so rare, only certain hospitals are trained to help. That's what happened with newborn baby Adelaide May. However, the first thing you notice about her is her sweetness, not her medical journey.

“She’s definitely sassy. She’s getting her personality. She’s the most sweet and loving little baby, but when she’s hungry, she’s hungry," said Stephanie May, Adelaide's mother.

Behind that big personality, lies an even bigger story for a baby who has just made her entrance into the world. Stephanie and Jonathan May had just scheduled an appointment at a fertility clinic when they found out they were pregnant.

"So, from the beginning, she’s been a little miracle," Stephanie said.

But soon after, their excitement became worry.

“So, at our 20-week ultrasound, we found out that she had CHAOS and were like, 'CHAOS what?'” Stephanie said. “You run into this rare thing and you’re like, 'What do I do?'”

CHAOS stands for congenital high airway obstruction syndrome. It’s a blockage of the fetus’s trachea or larynx.

“I was scared to death because you don’t know what it is. So, we were just kind of prepared for anything. We didn’t know if she was going to live or die," Stephanie said. “We knew that there were a couple different hospitals throughout the United States that deal with CHAOS but we were just lucky that Children's was in our backyard.”

They were connected with Kenneth Liechty at Children’s Hospital Colorado, who is a fetal surgeon and one of the few specialists in the country with experience and knowledge of CHAOS babies.

“Our job is to reassure the family of the accuracy of the diagnosis and give them what potential outcomes could be and say we will do our best. We have experience doing this repeatedly and with good outcomes," Liechty said.

Adelaide's highly specialized care required an exit procedure.

“So, we knew exactly basically from the get-go of what procedures were going to be done and what was going to go on. So, we had this crazy procedure, which is called the exit procedure, which is basically a modified c-section," Stephanie said.

“We balance delivering the baby versus getting further along in gestational age, and then it becomes a risk-benefit analysis of when to do the delivery," Liechty said. “Mainly the thing was airway at birth. We need to make sure we can provide a way for this baby to breathe and that’s where we use the exit procedure.”

It sounds complicated because it is, but it was successful. Mom and baby were under anesthesia, a tracheostomy tube was inserted to open Adelaide’s airway, and then she was safely delivered at 35 weeks.

“It’s not rare for us because we see a number of rare diagnoses frequently," Liechty said.

According to the Cleveland Clinic, between 2% and 3% of infants have one or more defects at birth. One out of every 33 babies born in the U.S. is affected.

“Because these are infrequent diagnoses but when it happens to you, it’s 100% of the time," Liechty said.

“For this little girl, we’re so lucky she won’t have to keep the trach forever. She’s going to get reconstructive surgery probably when she’s about 3. So this is just kind of like a little blip on our road to the future," Stephanie said.

“This whole experience has brought us closer together as a family," Jonathon said.

Stephanie and Jonathon want parents like them to know they aren’t alone and when it comes to rarities like this, there is more support than many realize.

“You never want something to go wrong with your baby but if it does, this is such a good resource," Stephanie said.