Birdie’s Story - Congenital Diaphragmatic Hernia (CDH)

Birdie was born undiagnosed with CDH on the evening of October 9, 2021. She has two older sisters, my pregnancy was completely normal and seemed no different than the previous two, so we were very shocked once she arrived. She came out with only the slightest whimper, so we immediately knew something was wrong. The NICU team began CPR, stabilized her on CPAP, and brought her upstairs for X-rays. After 30 minutes, they called down to inform us she had a left-sided Congenital Diaphragmatic Hernia (CDH), which we had never heard of. We finally got to her 4 hours after delivery, when we saw she was vented. 

We were given more information on CDH and they told us about Dr. Kays at Johns Hopkins All Children’s Hospital (JHACH). Birdie was born at St. Joe's in Tampa, just 30 minutes away from JHACH. Our pediatric surgeon, Dr. Scott, recommended we go there as that is where he would send his children if he were me and our neonatologist, Dr. Clark, also agreed. 

So we set off to JHACH, along with Birdie, at just 12 hours old. It was a rough week with a surgery scheduled for Wednesday. There was an emergency so we were pushed back for surgery until Friday, October 15. We were fortunate to spend a mere 46 days total in the hospital which included weaning down to room air and learning to eat on her own. Finally, she was released on Thanksgiving Day!

Birdie's hospital journey in the CDH unit did not quite end there though. After being home, she was readmitted by Dr. Kays back on December 23 for stomach exploration surgery and a cholangiogram. They found a blockage in her bile duct and had to remove her gallbladder. Thankfully she was released the following day just in time to celebrate her first Christmas at home. As we put it, it was a Christmas Miracle. 

Since returning home, Birdie has been thriving, smiling, and working hard with physical therapy and occupational therapy. Nothing can stop this sweet girl! We are beyond blessed and thankful for Tiny Hero and everyone we have met through her experience. We look forward to educating and spreading awareness for the CDH community!