Posts tagged CDH
"We needed to process it all and try our hardest not to look up things on Google...but you know we did. " - Max's CDH Story

After twenty-eight days in the hospital, we were able to go home. I know that stay seems so short compared to some, but I am so thankful how amazingly well he did and continues to do! Max will be 2 years old next month and has never had any other health issues.

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"I can just remember looking over to the ultrasound tech and seeing her smile turn into this very concerned look." - Ethan's CDH Story

“Meet your little guy, Mom! Congratulations.” That was when I knew that Ethan was in good hands because for the first time I had a doctor congratulate me on the blessing that is my baby. It was the best feeling in the world to know someone was fighting alongside us to do whatever possible to save our baby. 

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"Livia is our absolute world, and we are so blessed. We have had the roughest few years, but they have been the best of our lives." - Livia's CDH Story

Every day there was less medication and less oxygen. She eventually came home at 51 days old. No oxygen and feeding orally. SHE DID IT!

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"Gabriel’s story is unique because he not only went undiagnosed all throughout my pregnancy, but he was diagnosed by chance at 4 months of age. " - Gabriel's CDH Story

She tried to look at me with a reassuring look, but I knew something was very wrong. I said through tears in my eyes “just tell me.” She said she could not hear any breathing sounds on the left side of his body.

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"I went from not knowing CDH existed one day to allowing it to control me, my every thought, and every emotion." - Arabella's CDH Story

We paid an outside source for an early gender reveal. We delayed going home be we could not contain our excitement to finally have a girl. We were over the moon. We celebrated and danced around singing "we're having a girl." Little did we know how irrelevant gender was during the anatomy scan.

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"In 27 years, I’ve conquered 10 surgeries, 5 repairs, graduated with my RN, BSN, now working in a hospital and became a wife to an amazing husband and proud mama of two! " - Taylor's CDH Story

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors notice something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away, so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO.

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"Our journey is a long way from over, but we’ve come so far than the 35% chance of survival that we were initially given! " - Landon's CDH and CHD story

On day 323, we were discharged from the hospital...just a few days before Landon’s first Christmas! What a treat it was to spend Christmas together outside of the hospital. And on day 355, Landon finally made his way back home to South Carolina! Just one week shy of his first birthday! Our journey is a long way from over, but we’ve come so far than the 35% chance of survival that we were initially given!

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"She’s currently in physical therapy and speech therapy, doing the things that my prior MFM said she would NEVER do!" - Kennedi's CDH Story

She was placed on ECMO at less than an hour old and had her repair surgery was done at 6 hours old while on ECMO.  She stayed on ECMO for 13 days.  95% of Kennedis’ left diaphragm was missing and Dr. Kays said her lungs where so small they were nonexistent. 

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"After receiving the CDH diagnosis, we were advised to consider termination, so we left the appointment with little hope and with no direction. " - Scarlett's CDH and CHD Story

Despite her setbacks and despite undergoing open-heart surgery, she is a healthy, happy baby. She shows no signs of pulmonary hypertension, is off oxygen support, and is off all medications related to CDH, despite having been born with only 20% of her left lung.

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“He knows what his abdominal scar means and what Dr. Kays means to him. We are so blessed and thankful for every day with our Tiny Hero!” - Aiden's CDH Story

Even after all Aiden has been through he is still a bright, sweet, imaginative and inspirational little boy! We have talked to him numerous times regarding CDH and his surgery. He knows what his abdominal scar means and what Dr. Kays means to him. We are so blessed and thankful for every day with our Tiny Hero!

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“To most outsiders, CDH is ‘limiting’, but for me, it is the complete opposite. My CDH drives me to do well in school…” - Angel's CDH Story

To most outsiders, CDH is ‘limiting’, but for me, it is the complete opposite. My CDH drives me to do well in school, and because I was lucky enough to have an amazing doctor like Dr. Kays, I am able to pursue all of the things that I love to do, things that most people would be surprised that I am able to do.

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"It was a risky decision, but I believe he not only survived, but also thrived" - Jackson's CDH Story

Friday morning I got the call from Joy! “We’re coming to get Jackson.” Dr Kays decided to make the trip to Baltimore at the tail end of a nor’easter to transport my critical baby on ECMO back to JHACH. 

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"Braxton quickly realized the house wasn’t the quiet hospital he was use it.  He has 3 big siblings!" - Braxton's CDH Story

On 1-18-18 Braxton arrived and wow did we fully understand the importance of being with Dr. Kays. Braxton crashed on day 2 and went on ECMO.  He had his CDH repair on day 3 and after 7 days of Ecmo he was off. 

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"Since we have been home things have been wonderful and we are trying to live life like we have a "normal" baby" - Carter's CDH Story

We were so excited to be expecting our first baby. Everything had been so perfect until a 30 minute ultrasound turned into an hour and half. I knew something was wrong, but all they would tell me was they couldn’t get the pictures they needed.  Once we met with the doctor we learned he had a Diaphragmatic Hernia. 

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