At 20 weeks pregnant, one expecting mom and her husband received devastating news: their baby was diagnosed with a congenital diaphragmatic hernia and a black hole, her stomach, could be seen in her chest on the sonogram.
The distraught parents researched their baby's condition and came to the same conclusion as her doctors. "Survivability could be less than 50 percent depending on several factors," the unnamed dad shared on Imgur. "One of our perinatologists told us it's better to just 'let this one go.'"
Despite this doctor's blunt advice, the parents simply refused to do that. They were referred to more specialists and learned that their baby's case wasn't severe enough to qualify for surgery but were offered the option to enter a clinical trial in Texas that looked at the operation's impact in less severe cases. "The burden of weighing a possible benefit vs. no benefit vs. possible harm (not to mention known surgical risks to mother and baby) is something we struggled with," he wrote.
After weighing their options and making a decision to instead go to Johns Hopkins All Children's Hospital in Florida, their little girl was born at 39 weeks and was immediately intubated and moved to critical care where she was sedated, and multiple central lines were started. "I've never felt more torn than during the first few minutes after delivery. In one side of the OR my daughter was being intubated and was barely clinging to life . . . on the other side my wife was recovering from having just given birth," he wrote. "I parked where I could see both and let Mom know her baby was being taken care of."
At four days old, their strong baby girl had surgery to repair her diaphragm and as the couple shared their story with other parents, they were surprised to learn how many others endured similar experiences. "They had also been told to let their kids go. They had also searched desperately for alternatives," he wrote. "The results of single centers are being lost in the noise of bigger data. The complications are intimidating and the prognosis grim in the wrong hands. It is much better in the hands of those who have dedicated their lives to caring for CDH babies."
Now at 29 days old, their baby girl is going home and her parents are hoping that their story will spread awareness and hope. "I'm not mad that we were told to let her go," he wrote. "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."