Posts tagged Dr. Kays
"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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"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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"We held our living, breathing baby for the first time on Day 29- truly a moment neither of us will ever forget." - Micah's CDH Story

The overwhelming support of family, friends, employers, and the CDH community coupled with many, many miracles sprinkled throughout the next five months enabled us to relocate from California to Florida in preparation for Micah's arrival.  God’s hand was so evidently involved in every step of the way.

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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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“Caleb is now a 17-year-old high school honor student who is musically talented and a varsity baseball player." - Caleb T. CDH Story

We went home with more questions than we had going to that appointment. In a short amount of time, we learned what we could about this life-threatening birth defect. We also learned that Pediatric Surgeon Dr. David Kays had one of the highest survival rates in the world for a congenital diaphragmatic hernia repair.

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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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"Several weeks later, when Myla was taking full feeds and steadily gaining weight, they started all of her discharge tests. Everything looked great and discharge day was here!" -Myla's CDH Story

A parent’s worst nightmare is hearing something is wrong with their child. Our sweet unborn baby had been diagnosed with a Congenital Diaphragmatic Hernia (CDH). Casey and I had never heard of this before.

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" Colt was born fighting. He let out a little cry and fought the intubation. I was able to get a very quick look at him before he was taken to the CVICU." - Colt's CDH Story

After coming home, Colt has thrived. He was cleared by cardio. He's gained weight like a normal baby would. He's on normal well baby visits without weight checks in between. At 5 months old, he's already sitting up on his own.

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"Google was definitely not my friend that day, and I was convinced at that point that my baby would not make it." - Lucas' CDH Story

I just did not know what to do. Even though my doctors seemed confident that Lucas would survive, I knew I would never forgive myself if I didn't get him the best care possible and something happened.

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"We heard the news through a filter: all we gathered was "defect," "severe," and "surgery." - Tuanny's CDH Story

Tuanny is now a year old, already had his annual check up with Dr. Kays, and has done extremely well at home. He battled through a few colds and had a bad bout of stomach flu and an ER visit but reached some great milestones:  rolled over at four months, crawled around between six and seven months, and has been scaling the walls and walking with assistance since eight months.

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"I could feel the experience and confidence of the people around me. I knew Drew was going to be ok." - Drew's CDH Story

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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"Feedings started off a little rocky, but once she got the hang of it, there was no stopping her." - Reese's CDH Story

Dr. Kays spent 3 nights at her bedside doing everything possible to keep her off ECMO. He informed us that she was a lot sicker than we anticipated and was not improving much, so on day 4 he decided to do her repair surgery.

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"She told us CDH was the worst-case scenario, and that we would talk more about this if in fact this was what it was." - Reagan's CDH Story

What was supposed to take 3-4 hours turned into about a 10-hour surgery. Dr. Kays had said in his years of experience, he had never had to put a baby on ECMO in the middle of surgery, and he had never encountered anything like her diaphragm and her other anatomical abnormalities that she had.

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