Baby Ellie’s CDH Journey

Anything you can contribute to help Clare, Cody, and Baby Ellie will allow them to focus fully on the health of Clare and Ellie during this difficult time. 

The week of 4/5/2021

Clare & Cody found out that Ellie has a congenital birth defect called a congenital diaphragmatic hernia (CDH). This means that some of Ellie’s organs slipped above her diaphragm and are currently developing in her chest, putting pressure on her lungs and restricting lung growth and development. CDH is a life-threatening birth defect.

When Ellie is born, she will be taken straight into surgery to try to move the organs back into their correct placement and repair any damage that has been done. Ellie will then start a long term stay in the NICU to recover from surgery, and to ensure that her lungs will be able to develop and function properly.

Here is what they are finding hope in:

⁃ Early on we they some issues with providers and decided to make the change to OHSU. OHSU has some of the best pediatric surgeons and specialists in the country who will be in the delivery room waiting to save Ellie.
⁃ Ellie is about 2 weeks ahead in growth, so she has been preparing herself to be strong during surgery.
⁃ Ellie’s current lung growth is about 80% of what it should be. This is very high for a baby with CDH, and the higher the better to help her breath on her own.
⁃ Most normal pregnancies don’t do big anatomy scans at 36 weeks, but Clare’s blood pressure was raised and Ellie was big so they wanted to do one last scan before delivery and caught this defect by chance.

At this time, we do not know if sweet Ellie will recover fully or at all and CDH is a life-threatening birth defect.

“We have great faith that Ellie is going to fight as hard as she can to stay with us. We will also fight as hard as we can to keep her with us. It won’t be an easy journey, but we look forward to the moment/day that we will be able to hold her and bring her home. We take great peace in the fact that we are being treated at OHSU with some of the greatest specialists and teams and that Ellie will be given the best care possible.

We thank you all for your prayers, well wishes, manifestations, love, and support. Know that we feel your love and support and that we look forward to the moment we get to post that our baby is a NICU graduate and coming home to meet her big sister Bella.

So much love,
Clare, Cody and Baby Ellie “

(this page will be updated as more information is know )