Posts in Liver Up - Left Sided
"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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“We watched our daughter go through more in her first year of life than some people do in a lifetime, but yet she never let CDH dull her sparkle.” - Logan B. CDH Story

If I could give any advice to CDH families it would be to stay positive and no matter how hard it may be, never lose hope. And to reach out for support, every story is different, but we’ve all been through the emotional rollercoaster.

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Drew's CDH Story - LCDH

So, there we were, over the moon watching every beautiful movement our little baby made on the screen. He said “Its’ a boy!’ as he continued to scan. I kept wondering what the black hole that he kept labeling “ST” was. It was near his heart, and I didn’t remember the heart being so narrow on baby scans. I

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"He has survived more than most babies and he is thriving." - Jaxson's Story

He also endured many complications during his 92-day NICU stay. At 7 days old, he had an intestinal perforation; at 3 weeks old, he suffered a pulmonary hemorrhage; and at 2 months old, he had a horrible infection. We know that it is because of God and the skills he has given Dr. Kays that we are able to enjoy our son and watch him grow, despite all the challenges he faced early on.

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