Miracle Baby In Lodi With Rare Condition Reaches First Birthday
LODI (CBS13) — A Lodi family is celebrating every single breath their baby takes. She was diagnosed with a rare medical condition at birth — so rare that only 95% of babies with the diagnosis do not make it to their first birthday.
Maggie just celebrated her first birthday about a month ago, but getting to that milestone was not easy.
Sarah Clark, Maggie's mother, knew her pregnancy would be challenging when doctors warned of complications with the baby. Some even encouraged her not to go through with it.
"It's terrifying," she said. "You don't know how she's going to...how her outcome is when she's born."
Maggie was diagnosed with trisomy 18 — or Edwards syndrome — which is a rare disease that could lead to congenital heart disease, developmental delays and breathing abnormalities.
"I just remember my knees buckling out and hitting the floor and my wife was already on the floor, and I was trying to figure out what's wrong," said Ralph Clark, Maggie's father.
Newborns often have a 50% chance of surviving birth and only a 5% chance they'll live to their first birthday.
"It's the worst thing you can hear, the absolute worst thing to hear as a parent," Sarah said.
Sarah said faith is what has gotten her through everything. And the family needed it. Maggie struggled tremendously for the first three months, needing surgery to repair a hole in her heart.
"I think I've watched her almost die a handful of times," Sarah said. "Those were very rough moments, but here we are."
Maggie just celebrated her first birthday. The Clarks say doctors are now even using her as an example of babies who survive Edwards syndrome.
"There are so many kiddos doing amazing things, and so to share Maggie, to give hope to those parents who are faced with this diagnosis, because you don't know a thing until you're faced with it," Sarah said.
Maggie still has a long road ahead of her seeing several specialists including a cardiologist and pulmonologist. She'll have physical therapy and occupational therapy, but Mom and Dad are just taking every day one step at a time.
"Something as serious as Edwards or Pitau syndrome, every single breath is a blessing, every little achievement," Ralph said.