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

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Owen’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 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

Haylee was expecting her first baby and the pregnancy was going very well. It wasn’t until her 27th week appointment her world was shaken. Haylee shares, “My pregnancy leading up to the diagnosis was magical, I was in love with being pregnant and the idea of how as a family we were going to have so much fun and go on many adventures. My husband had just left for an assignment in the military, that would keep him away for a couple months, but it was okay, because everything was just fine with our baby. I was 27 weeks pregnant going in for my normal anatomy scan to confirm the pregnancy was moving in the right direction. One never thinks it will happen to themselves until it does.  When the words Congenital Diaphragmatic Hernia was spoken to me for the very first time my world turned upside down. The first thing in that moment I thought was, how do I protect my baby boy.”

Haylee took charge to learn everything she could about CDH and prepare for Owen’s arrival. Haylee shares with us, “Owen was delivered with a high level NICU team waiting for him to be delivered, as soon as he entered this world, they took him away within seconds to assess how critical his CDH actually was. He received ECMO within 24 hours of being alive, because the NICU had reached all life sustaining measures to keep him alive. So many additional health issues come along with CDH, and the team was not able to stabilize him enough for him handle surgery.”

be several weeks, on December 14th, before Owen was stable enough for the surgical team to repair his diaphragmatic hernia. Haylee shares, “when they take your child away from you once again for another operation it never gets any easier, as he went through those double doors where they don’t allow parents my heart sunk to the ground. When Owen returned from surgery, he was not a hundred percent fixed. Like I said before so many more health issues go along with CDH. We were nowhere to be over this and going home. Owen was still very sick.”

My husband and I had so much excitement, but so much fear as well. Going home meant we wouldn’t have the NICU and everything that came with it. The amount of resources for such a long period of time but we realized when we got home Owen liked the quietness of not having someone do something to him every thirty seconds. He seemed relaxed and extremely happy. Our sweet boy for the first time was allowed to visit his family. We loved every second we had with him at home being able to share our memories and creating new ones with our family. I was blessed to be able to enjoy mother’s day with my baby boy at home with family. Owen seemed to have received exactly what he wanted, time to be with family and coming home,” Haylee recounters about the milestone of taking her son home.

On May 12th 2020, Owen passed away that night surrounded by the love of his parents. Haylee shares, “not a single second goes by where we don’t miss him and speak of his name. The grief I carry because I lost my son to the fight of CDH is extremely hard to fathom. It’s been over a year and a half since I’ve lost my son and it hasn’t gotten easier nor will it ever. My husband and I have had another child since Owen has passed, and I tell her everyday how her brother was a true warrior. She would be so proud of Owen and he would have been such a great big brother.”

This image has an empty alt attribute; its file name is cdh.png
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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