After His Daughter Was Diagnosed With A Lesser-Known Condition, This Dad Is Raising Awareness To Help Others Like Her

One doctor suggested they "let this one go," but further research opened new doors.

One dad is using the Internet as a platform to spread an important message about a lesser-known condition. The father posted a powerful letter on Imgur under the username ollathair about his baby daughter, who was diagnosed with congenital diaphragmatic hernia (CDH) — a condition which affects the diaphragm.

He and his wife received the diagnosis when they were just 20 weeks pregnant. In a sonogram, the baby's stomach appeared as a black hole in her chest.


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One doctor suggested they "let this one go" as the rate of survival is often less than 50 percent. The parents, however, decided to do some further research to explore other options. 

They were eventually referred to a specialist consultation and found that their baby's CDH wasn't actually considered severe enough for surgery. Instead, they were given the option of entering "a clinical trial in Texas that looked at the operation's impact in less severe cases."

The appointments made the dad realize one very important thing. "The one thing we absolutely realized coming out of the consult was that we had to receive care at a place that is familiar with the condition," he explained, "To our minds that was in Texas with or without surgery. The wife did more research and we found a program was being built around a physician in St. Pete, FL ... just 25 minutes from family ... unknown to our obstetricians in Jacksonville just a few hundred miles away."

After meeting the All Children's Hospital team in Florida, the dad "knew within five minutes"  they had made the right decision. 

When his daughter was born at 39 weeks, she was immediately intubated and moved to critical care. At 4-days-old, she had surgery to repair her diaphragm. 

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Now, at 29 days, his daughter will be going home with her family.

The experience has made the father realize some important things about the medical field. In his letter, he points out he is not mad at the perinatologist who suggested they abort the baby. What he is concerned about is raising awareness about CDH and other conditions that aren't as well known, and to highlight the importance of doing your own research as well. 

"What we found in talking to other parents was that their experience was similar to ours. They had also been told to let their kids go. They had also searched desperately for alternatives," he explained.

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"It made me realize that there are diseases and conditions that genuinely need awareness in a world that is saturated with awareness campaigns for well-known problems," the dad concluded.

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CDH UK points out that the condition occurs in around 1 in 2,500 births and accounts for around 8 percent of all major congenital abnormalities.

To find out more about CDH, you can visit the website.

(H/T: Popsugar)


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