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The Follmuth Family

Baby Ella

Scroll down to see updates as the Wyse family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Update 5/1/24

In December 2023, my family went to an appointment for a routine anatomy scan for my daughter, Ella. We were told that there might be something wrong with her diaphragm. A week later, we received her official diagnosis for a congenital diaphragmatic hernia.

A month later we would learn that our daughter’s case was severe, but we had hope because we were already 95% certain that we would be going to John Hopkins All Children’s Hospital. Phoenix Children’s Hospital explained how severe our daughter’s case was and that she’d likely need ECMO and a minimum six months stay in the NICU - if she even survived.  They told us they had two recent cases as severe as Ella’s.  The first case did not survive.  The other case had a quality of life much lower than we dreamed for our daughter. This hospital only had a 60% survival rate for babies with this condition.

We were positive it was time for a consult with Dr. Kays.  We sent all of our tests over and he told us he believed our daughter had a 90% chance of survival and 50% chance of needing ECMO upon birth. It was clear the team in Florida would be so much more knowledgeable when it came to handling our daughter’s care.

We didn’t know how we’d make it work, but we decided we would relocate temporarily to save Ella’s life.  With the help of family, friends, and a few very special organizations, all the pieces fell into place to make it happen.

Ella was born on April 16, 2024.  She was intubated immediately upon birth and did not need ECMO.  Before she even had her repair surgery, they were having to lower her vent settings consistently.  On April 22nd, she had her surgery to repair the hole in her diaphragm and we learned she had a grade C hole.

On April 30, Ella was doing well and had been weaned off her vent enough that it was determined it was time to extubate.  After a complication, she immediately had to be intubated again.

We’re waiting for more tests to help us determine next steps and letting Ella rest before we attempt any next steps.

Update 5/7/24

I’m too excited to not share this update and attached photo. Yesterday, Ella was finally extubated successfully! I got to hold her for the first time. It was magical. 

The Follmuth Family
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