Note: As of November 2013 April 2014 this post has been viewed over 2,000 4,000 times. I hope you find it helpful. I would also be thrilled if you left a comment to share your own experiences. I’m sure other readers would appreciate it.
“What’s it like having a baby with a cleft lip and palate?”
Oh, if I had a dollar for every time I get asked, I’d be broke. Seriously, no one asks the question. In fact, most people (strangers) don’t even acknowledge that there’s something different about the baby. It’s not like it’s hard to miss (“Oh, your daughter has a bilateral cleft with a Tessier 5 and a facial hemangioma? I wouldn’t have noticed if you didn’t mention it…”), yet most people delicately avoid mentioning it for risk of offense. Occasionally a few people are direct about it, and I always thank them, telling them I appreciate their directness and their interest.
So, what’s is like having a cleft lip and palate baby?
- First, the key strategy is to stay positive. I know, so cliche, but as a parent it is my responsibility to make my child as comfortable and happy as possible. If you worry about everything, spend a lot of time going on line and getting depressed, fret about blame and what if scenarios, get wound up about what other people think, not only are you going to cripple yourself emotionally, but your child will be negatively influenced by your attitude. It is your obligation to see past the issues and share the joy of having a baby.
- On a related note, how people react to your baby is strongly persuaded by how you are with your baby. If you are relaxed, treat your baby as the normal human she is, and address questions about the cleft in a straightforward, good natured way, people respond really well. Often children want to know if the baby’s in pain. Not only are children reassured when you tell them she feels like them, but it’s good for adults to hear, too, because they often assume the worst without asking. Everyone we’ve met has responded very well to Annie. It’s having the strength to enter a room full of babies and moms, knowing your child stands out, and being good with that.
- Don’t go on line! At least not for cleft-related research. Your child is an individual, and she will look the way she will look. I deliberately avoid the sites and am happier for it.
- The mirror plays weird tricks. Frank and I are repeatedly surprised how different Annie looks in the mirror than real life – it seems to distort. Apparently this is not unheard of, according to one of the doctors at Sick Kids. I don’t know why it does it, but we definitely see a difference.
- While Frank is regularly speculating on what’s going to be (i.e. “how do you think they’re going to fix the cleft?”, “when do you think her surgery’s going to be?”, “when will that hemangioma go away?” etc.), my philosophy has been to worry about the things we can control, not the things we can’t. If the hemangioma will go away through medication, then I worry about filling her prescription and remembering to administer it. If we need to ensure her orthodontic plate stays in all the time, then I worry about making little tape/elastic strips, keeping them secure on her face, taping her upper lip. I don’t worry less; I’m just selective about what I worry about.
- Having a cleft baby is more work, but it’s manageable. I couldn’t breastfeed, so I pumped. But other mothers go through that. Trying to ensure her plate stays in her mouth, messing with the lip and cheek tapings is a hassle, but doable. Sure, we have to regularly “goop” her left eye to ensure it doesn’t dry out, but so what. Going to the Hospital at least once a week (although that has now slowed down to every other week) is expensive ($16 parking) and could easily be considered a pain, but I like to think of it as her Wednesday day care. It just becomes part of the parenthood experience.
- Annie’s very lucky to have a team of strangers – who are becoming friends – provide excellent medical care. Unlike most other parents who are pushed from the plane into parenthood, we’ve had constant access to help. How many other parents know how heavy and long their babies are on a nearly weekly basis?
- When we met with Dr. Fisher in November, he told us that parents always say post-surgery that they miss their babies’ cleft smiles. We were sceptical until we got to know Annie’s smile. As her pediatrician exclaimed the first time she saw it, “that’s a million dollar smile!!!” I’m completely biased, but I think her smile is extraordinarily beautiful. Farah, the cleft lip program social worker, told us that some parents don’t take any photos of their cleft babies before their surgeries, perhaps in the hopes they can erase the past’s imperfections. I can’t think of a bigger tragedy. Maybe the photos don’t do them justice, but I get now why Dr. Fisher has a real soft spot for cleft babies. They are special.
I’m sure there will be more to add as we go, but this is what’s on my mind.
meinbubuleh 