Okay, so I’m not necessarily the expert on this syndrome. I’m just one mom with one daughter with Cri du Chat.
But there are a few facts out there that we’re trying to spread.
There are about 1 in 50,000 babies born with 5p- syndrome each year. These babies are small for their gestational age. They often have breathing problems at birth.
Olivia was born nine days overdue but showed symptoms of a collapsed lung. I didn’t know it at the time but she turned gray almost immediately after her cord was cut. She had three nurses surrounding her, trying to get her to breathe. I couldn’t see much because the nurses were protecting me from the view but I did see her retracting as she struggled to breathe.
The information available concerning Cri du Chat is very outdated. Pediatricians and geneticists are giving parents terrifying statics that aren’t based on recent studies.
We had an amazing developmental pediatrician who finally gave us O’s diagnosis. This doctor told us not to go home and Google the syndrome because the information was so outdated. She said it was based on information gathered over forty years ago. She explained that the information was based on patients who’d been institutionalized either at birth or soon after. She reminded us that every child does better, shows more progress and learns more when they are in a loving home with their parents. She told us to take Olivia home and let her show us what she can do.
The old information says that individuals with 5p- syndrome will never walk, they will never talk and they will likely live their lives in a vegetative state.
By the time we got Olivia’s diagnosis, she’d already proven this ‘fact’ wrong. She wasn’t walking yet, she walked two months after we received her diagnosis. But she was crawling, she was sitting up, she was laughing and she was thriving. She started talking right around her third birthday, which was six months after she started walking.
Obviously, there are varying levels of severity with this syndrome. There are definitely some kids who will never walk or talk but for doctors, medical professionals to tell new parents that their baby will absolutely never, ever do these things is so unfair. There is no way to tell by looking at a new born baby who has just been diagnosed with Cri du Chat whether or not this child will walk or talk. All we can do is give our children the therapies, the love, the chance to reach their fullest potential.
Today we’re wearing striped socks to honor Olivia and all her brothers and sisters with 5p- syndrome. For parents of children with this syndrome, every day is Cri du Chat awareness day. But we’ve set aside this week to remind the world to look beyond the high pitched voices, the awkward gait, the wheel chair and even the feeding tubes and see beautiful, strong people who have so much to offer this world.