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Ben’s Story – Make A Tax-Deductible Donation to Fight CDH

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Ben’s Story – Make A Tax-Deductible Donation to Fight CDH

Every year, 52,000 children are born with CDH. In Higher-Income Countries, 50% of these babies survive. In Lower-to-Middle-Income Countries, less than 1% survive their first week of life. Help CDH International give these children a fighting chance.

Make a one-time donation.

  • CDH International has a 9% overhead. This means that 91 cents of every dollars goes directly to fight CDH.
  • CDH International works diligently to help over 6500 member families in 74 countries on an annal budget of just $250,000.
  • CDH International is registered in 7 countries to better fight for these babies globally
  • CDH International undergos annual voluntary financial audits to show our commitment to transparency
  • CDH International shares not only annual financial statements, but our full 990 annual tax forms as well

Make an automated recurring pledge to help fight Congenital Diaphragmatic Hernia.

Our Family’s Battle Against Congenital Diaphragmatic Hernia

How has CDH International Helped You?

CDH International was my first avenue of support when I first learned that my baby would be born with CDH. I was connected to the organization early on and received a tote bag full of great information that helped me navigate and prepare for our CDH journey. Through CDH I have met some amazing people, including parents of survivors and those who have earned their wings. The support and shared experiences continue to help us. CDH will always be part of our journey. 

Diagnosis

Our story begins like so many others in the CDH community, visiting your OB for a routine pregnancy checkup and an ultrasound. For me, this day came at 29 weeks pregnant. My pregnancy had been picture-perfect. The ultrasound was going as normal, pausing for a screen shot of my baby every few seconds. Then came the long pause, the look that something didn’t seem right, and the words “I’m seeing something on the scan, I’m going to grab the doctor”. They came back into the room together, the doctor looked at the ultrasound, and in a very gentle yet direct way, he said my baby had a Congenital Diaphragmatic Hernia. He told me he’d have a 50% chance of survival, that they really didn’t know the prognosis until he was born, and that his best chance was to go full term to get his heart and lungs as strong as possible. Then he said he’d be with me every step of the way and help me get there.  We made it full term!

NICU/Surgery

My son decided to join the world by emergency c-section on Friday May 13th.  The short seconds between him being pulled from my belly and a first cry seemed like an eternity. The cry only lasted a second though, he was immediately intubated and then taken to the NICU.

It was so hard to see my baby in the NICU, he was so little and there were tubes and wires coming from every direction. There were monitors and machines, bright lights, and constant beeping noises. It took my son a week to be strong enough for surgery. 

Seven days after he was born, on May 19th he had surgery to repair his diaphragm and move his organs out of his chest cavity and into his abdomen. At 9 days old I held him for the first time ever.  At 15 days old he came off the ventilator and could finally breathe on his own. He would spend the next couple weeks learning how to do all the things that come naturally to most babies, like breathing on his own and eating from a bottle. Finally on day 28 I was able to bring my baby home.

Current Situation 

Ben is now 10 years old and doing great! He loves sports and presently has no complications. The first 2 years of his life were the most challenging. He had two additional surgeries after leaving the NICU and multiple hospital stays for several issues including severe reflux and RSV. At 20 months old he had emergency surgery for a double bowel obstruction. Since then, he has had a few x-rays to make sure everything is ok. He has been great, very healthy, and we hope it stays that way!

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Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when a baby’s diaphragm (a thin sheet of muscle that separates the abdomen from the chest) fails to fully form, allowing abdominal organs to enter the chest cavity and prevent lung growth.

CDH occurs in approximately 1 in 2500 births, with over 1600 babies diagnosed each year in the United States alone. There is currently no known cause, but studies have suggested that it is likely due to a number of genetic and environmental factors.
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