The last thing any pregnant person wants to hear is that their baby has an abnormality. Abnormality. The word sends shivers down my spine. Perhaps that why anything that isn't considered "normal" is discussed in hushed tones and concerned whispers. That's definitely why there are things that no one tells you about having a baby with a cleft lip, but I will.
When I heard the word "abnormality," I was around 22 weeks pregnant with my second child. The ultrasound tech saw an incomplete formation of the lip, known as a cleft. Because my partner and I didn't have any genetic markers or family history of cleft lip or palate, we opted to have an amniocentesis to understand more about what might have caused the cleft. After the procedure (which I went to alone and, no, I don't advise) they threw around words like Trisomy 18 (March is Trisomy Awareness Month) which, quite honestly, scared the sh*t out of me. The week of waiting was interminable. At the end of it we found that our little peanut, as far as anyone could tell, only had a cleft lip (we'd find out whether there was palate involvement at birth).
This is not easy for me to write about, because I'm not proud of the internal struggle I had with facing my soon-to-be child with a cleft. However, if I've learned anything about being a parent it's that if I have had the struggle someone else has, too. If you're anything like me, you'd never really given much thought to cleft lips or palates until hearing your kiddo has one. Unfortunately, the only exposure I had to the entire topic were the usually offensive, generally erroneous depictions of people with clefts on shows like The Family Guy or brutal pictures of children with uncorrected clefts in third world countries. I wish I had some down-to-earth mama or papa to lay it down for me at the time. It may have made some of my anxiety dissolve to know that we weren't the only family in this hemisphere that was going through something like this. So here are the things no one will ever tell you about your baby with a cleft lip, but I will.
You Will Face Your Own Ableism
Deep Breath. I was afraid that I wouldn't think my baby was beautiful. There, I said it.
That fear was a lot to unpack because it wasn't just that I was afraid. It was also that I hated myself for being afraid. How could I ever worry that I wouldn't like my child's face? And what a horribly ableist, vain worry to have, anyway! All I should be worried about is if my baby is born healthy. There are so many parents who have it so much worse facing real concerns not just vanity concerns. Here I am petrified that I will experience revulsion when looking at a newborn's cleft! Shame. On. Me.
What I can tell you from the vantage point of five years later is that once I was able to accept that I had some heretofore unacknowledged ableism, vanity and privilege and forgive myself for it I was able to let it go. Letting it go allowed me to be present for whatever my experience was going to be at first sight of my baby.
You Will Fall In Love With Your Baby's Face
After all that worry and unpacking of judgments I didn't want to know I had, when my second child came out my breath halted and my world stopped. Because, you guys, he was beautiful.
People Will Say Stupid Things Before The Correction
My mother-in-law, who was a nurse at the time, pulled out the photos of Pad at work and one of her co-workers refused to look at them. He said something along the lines of "I can't look at cleft babies. I feel so horrible for them when I see their pathetic faces."
Dude?! Seriously?! That needed to be said to doting grandmother?
Take Only The Advice That You Need
Just like when you have babies without clefts, there will be a lot of information thrown at you before and after the baby is out of your body. When it came down to it, I really didn't need to be worked up over whether my baby would be able to latch properly or if there would be breathing difficulty in babies with cleft.
Yes, it's one thing to be prepared, and you should be. However, being overwhelmed with the possibilities does nothing but make you lose sleep and with a newborn you need as much sleep as you can get! My advice? Go to one trusted professional source (like the cleft team at your local Children's Hospital) to get yourself prepared. Then just wait until you meet your kiddo and find out what they need.
Kiddos with cleft lips and palates are known to suffer from feeding difficulties. But please do not take random strangers' advice about it (remember, people will say stupid things.) There are tons of resources from your local cleft team if you need special nipples or bottles.
I was able and chose to breastfeed my Padd. He latched like a champ moments after being born and didn't let go for 18 months. Nothing like his older sister who had no cleft and refused the breast almost immediately. Different babies need different things.
Waiting For The Surgery Will Be Hard
My first impulse after finding out Padd had a cleft was, of course, to do mad research. I wanted to know everything about everything. Some sites advised that they would do surgery immediately after birth so I wasn't fully prepared when the surgeon told us that barring some unforeseen circumstance, Padd would likely not have surgery until much later.
I remember being about nine months pregnant and grief stricken with this news. I was still very much in the throes of unpacking my newly discovered ableism and couldn't stand thinking of the scrutiny my poor baby's face would receive for the who-knows-how-many-months until his surgery. This burden eased a bit after he came out and fell in love with his sweet face. But I would have a certain amount of anxiety taking him out and seeing folx reactions go from "Oh! Baby!" to, after peeking into the stroller, "Ohhh. Poor baby." And sometimes, "Ugh!" Recoil.
Other People Will Be Uncomfortable
See recoil comment above. At first I was withdrawn and sad when I noticed others' discomfort. Quickly, however, I became angry. This beautiful creature is a baby. Lavish praise on him as you would any other baby or STFU and go away!
Our close community certainly didn't feel this way, but out in the general population both my stay-at-home partner and I definitely got the unspoken message that we should be keeping Pad out of sight. There was a low rumble of rebellion in our refusal to let his visible cleft be some sort of secret. Though not all states keep statistics on birth defects, of those that do cleft lips and palates are one of the most common birth defects. To me, it just makes no sense to keep these babies hidden because adults don't want to see different looking faces.
You Will Consider Not Correcting The Cleft
If your baby has no major feeding issues the cleft team will probably advise to wait until between seven and ten months to do any kind of surgery. By that time, if you're anything like me, you will be completely obsessed with your baby's beautiful, huge smile and you will seriously consider not correcting the cleft.
My partner and I relied on each other's support so much during this time. Considering not correcting the cleft was not something we were prepared to feel. We questioned: if Padd was thriving and happy why would we put him through a purely cosmetic "correction?" Surgery is always risky even in the best of circumstances. Was this a risk that was fair for us to take on behalf of our baby? What message were we sending him by telling him we were willing to put his life at risk to correct a cosmetic imperfection?
You Will Miss The Biggest Smile On Earth
You will miss the big smile. The biggest smile on earth. That wide mouthed grin that makes anyone's face crack into pure happiness. But you also get to fall in love with a new face. And that will be pretty stellar, too.
Breast Implants And Clefts
Totally delicious to learn that our foremost surgeon in cleft correction also specialized in breast implants. Those are her two specialties.
Even more delicious to watch your 2-year-old toddler laughing gleefully while building towers out of the implants in the consultation room. "I like the way they feel, mama!"
It Will Be Scary, But You'll Get Through It
Having the surgical staff roll Padd away in the hospital crib was like watching time stop. It was one of the hardest things I've ever had to do to remain still and not run after him. I'm pretty sure I dissociated during the surgery. All I remember is sitting in silence with my partner in the outdoor cafeteria at the hospital when the surgeon peeked her head out, smiling. It was then I knew I could breathe again.
People Will Say Stupid Things After The Correction
Ultimately, we did decide to go through with the correction. Though I do think the above questions warrant a deeper exploration within a cultural context, I am glad we did the surgery.
However, people will still say stupid things about the corrected big tear. (Big tear is Padd's term for his cleft now that he's old enough to see the difference in his and his sister's baby pictures). Our most recent experience was in the check out at a grocery store the cashier pointed directly at Padd's scar and said: "Oh my gosh! What happened to your face?"
You'll Forget The Cleft
The cleft, or as Padd calls it, the big tear, doesn't really come up anymore four years after the cleft correction surgery. Sometimes I'll be taken by surprise when somebody notices. For example, the dentist saying his extra tooth may go away after his baby teeth fall out. Or the nice mama at yoga class who said, "We should get our sons together. I love it when my son has other cleft kiddos to play with so he knows he's normal."
I know it's easy for my super sensitive, super sweet kid to feel left out when he doesn't have something another kid does. Now he has a baby sibling who has no cleft so I couldn't help but worry when he started getting curious about why his baby pictures looked so different from his sibling's face. What I've started to see, though, is a small spark of pride when Padd talks about his "big tear" that gives him extra teeth "like sharks."