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3 Kids With Congenital Diaphragmatic Hernia

Cecilia and David, Jr.

My three children were all born with congenital diaphragmatic hernia (CDH), which is a hole in the diaphragm.

Ryan was born in 2007 and spent 4 1/2 months in Akron Children’s NICU. Now 5 years old, Ryan has a g-tube and is fed through a mickey button feeding tube. He also has other medical issues.

Ryan

My daughter, Cecilia, was born with CDH, but she has no other medical problems. She was in the NICU for about six weeks. She’s now 2 years old and will turn 3 in January.

My 7-month-old son, David Jr., had CDH and was in Akron Children’s NICU for more than 3 months. He was on ECMO and is also g-tube fed through a mickey button.

My two sons also have a rare chromosome disorder called 1q21.1 deletion and duplication. With the 1q21.1 duplication syndrome a part of the sequence of chromosome 1 is duplicated twice or more. My daughter doesn’t have this.

My kids are truly miracles from God. I want to give thanks to all the NICU doctors and nurses who took care of Ryan, Cecilia and David Jr. I also want to thank surgeons Dr. David Andrews and Dr. Timothy Pittinger.

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Comments

  1. Amazing!  

  2. All in one family? this is really rare I would think.  Baylor College of Medicine in Houston had a study for CDH genetics that we participated in – I would think they would want to have you participate if they are still doing it.  Our 13 yr old did ECMO and tubes for 3 years, but now doing great. 

    • tewksbury7986071012@gmail.com' David Tewksbury says:

      Hi, Yes, have 3 all in one family. There is actually a study in Boston ,but they don’t make you leave state just to do testing , which is good. Because ,otherwise, I probably wouldn’t be considering doing the testing. We are seeing a Genetic doctor  here in Ohio. 

  3. The Tewksbury Family

  4. proudmom_1986@yahoo.com' Krystle Hentosz says:

    Need to give update all 3 of my kids have FOG2 Gene Mutation (which causes CDH) and I also have FOG2 as well. When I first had this story I didn’t know that info because we were in the middle of Genetic Testing through Boston Children’s.

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