DENVER — Emma Shearer is about to celebrate her first birthday. But this time last year, her family didn't know if she would live to see the first day of her life.
Emma's parents, Kelly and Matt Shearer, also have 4-year-old daughter, Madison. They know what it's like to hear their baby's heartbeat for the first time, to have a healthy pregnancy, to deliver a baby girl. So, when the couple went in for their second baby's 12-week ultrasound, they thought they knew what to expect.
Nothing could have prepared them for what they would hear.
Their second baby girl, Emma, had a life-threatening condition called congenital diaphragmatic hernia or CDH. And the bad news got even worse. Doctors in Seattle gave Emma a 10% chance of survival.
"Initially, they told me you need to terminate this baby," Kelly Shearer said. "That decision never felt right."
CDH is rare, occurring in roughly 1 in every 2,500 births in the U.S., which is about 1,600 cases a year. Even more rare was the severity of Emma's CDH case.
"With CDH," explains Dr. Ken Liechty, pediatric and fetal surgeon at Children’s Hospital Colorado, "the diaphragm fails to form. The diaphragm separates the chest from the abdomen and if it fails to form, contents from the abdomen can go into the chest."
That can prevent the development of normal lungs, among other life-threatening problems.
"Her stomach was already up in her chest at 12 weeks," Kelly said. "Everything was up in her chest so it smushed her little heart and her lungs didn’t grow."
But Kelly and Matt did their homework. And it led them to Children’s Hospital Colorado.
"Children’s Hospital Colorado has some of the best outcomes if not the best outcomes for diaphragmatic hernia in the United States," Dr. Liechty said.
The Shearers decided to take a leap of faith and move to Denver to give their baby girl a chance.
On May 29, 2018, Emma was born. She was immediately placed on ECMO heart/lung bypass to add oxygen to her blood, she was intubated, and she had 17 pumps of various medications keeping her alive. Dr. Liechty completed her CDH repair when she was just one day old.
Fast-forward to today and, against all odds, Emma is alive and her prognosis is good. Emma is celebrating her first birthday this weekend. Instead of gifts, her parents are asking their friends and family to donate to Children's Hospital Colorado on behalf of their daughter. To help other babies with CDH beat the odds, just like Emma.
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