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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. 


Update 5/22/24

Since my last update Ella has been taken off of CPAP and moved to oxygen and is doing well.  We started introducing feeding to Ella and she's up to 20mL bottles and successfully breastfeeding in lieu of bottles three times a day.  Now it's just up to her to continue increasing her bottle volumes to full feeds and continue growing.  We did have a little extra excitement this week when Ella attempted to remove her PICC line from her leg using her toes.  Fortunately, it gets to stay in place just a little longer while we get her feeds more consistent.

After more than two months away from home, the scary part of all this finally feels like it's over and being able to head home is within sight (though no actual talks of discharge have happened yet.)


Update 6/24/24

Ella has been discharged! The family will send a more detailed update soon. Congratulations, Follmuth family!


Update 8/7/24

We did it.  Ella spent 58 days in the CDH unit at John Hopkins All Children's Hospital and 21 of those days she was intubated, including 2 separate pulmonary hemorrhage events that gave us quite a scare.  We spent 99 days away from home for her care. This wasn't the picture I had for our daughter or my family, but I've learned so much and I'm so incredibly grateful to everyone who has supported us along the way.  7 months ago we got Ella's diagnosis and more or less were told by our state children's hospital that if she lived, we'd be looking at a 6-9 month NICU stay 3 hours away from home. They kindly suggested that her case was severe enough that she wouldn't even survive that.  Meanwhile, the CDH team at JHACH gave us hope.

Ella is expected to be on oxygen until at least her birthday because we live at 6500 feet elevation.  We'll be extremely cautious about making sure she's ready to wean from oxygen just so we can be sure to protect her heart and lungs.  Otherwise, everything feels strangely normal.  Ella passed her neuro and cognitive testing with average and above average scores - we were prepared for her to have delays in some areas, but so far that's not been the case.  She's quite the snuggler and is such a happy baby.  

I'm certain that had we not relocated across the country there would be a massive hole in my heart right now. Thank you to your generous donors who help make relocating across the country possible and less stressful in a tough situation that was unimaginable.  The support of our family has meant the world.  

Thank you for all the work you're doing with ECCF.

The Follmuth Family
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