Most babies have less than a 50% chance of surviving a condition that’s diagnosed before they’re even born, but now delaying necessary surgery to treat the problem is greatly improving the odds.
Robby Dumford is on the move now, but his mom, Barbie, says the tenacious toddler almost didn’t make it out of her womb alive.
Robby had a congenital diaphragmatic hernia, a hole in the diaphragm causing the organs to crowd up into the chest, so the lungs can’t develop.
It was one of the worst cases doctors had seen. Robby was given just a 20% chance of survival, and his mom had to decide whether to terminate the pregnancy.
"I remember just praying the whole time down at the hospital, you know, please give us a sign” said Barbie Dumford.
The sign she believes, was a ultrasound, where it looks like Robby is smiling and giving the thumbs up.
“Right then and there, I knew that we were going to fight” said Dumford.
The fight brought the family to Cincinnati Children’s Hospital. Traditionally, the diaphragm is repaired within a few days of birth. The team here waits up to 6 weeks to perform surgery. They also aggressively treat the baby’s high pulmonary blood pressure with medication to give the lungs more time to grow.
“The benefit of that, by waiting, is that when you take them to surgery and you are putting them through this stressful thing, their lungs are bigger, their pulmonary hypertension is less” said Dr. Paul Kingma.
With the traditional approach CDH survival rates are about 42% in the United States for babies undergoing the newer treatment that number climbs to 75% to 90%.
As for Robby, his surgery was a success.
“He’s a rambunctious 2-year-old that loves to play” said Barbie Dumford.
Playing the waiting game may have saved his life.
Like most children with CDH, Robby has had trouble with acid reflux and has a higher susceptibility to heart and lung problems as well as developmental delays.