Roberto Santiago comes to grips with labeling his daughter born with a cleft palate as being ‘special needs’.
I sometimes feel guilty when I say that my child has special needs because I know that it is a ‘cheat’. Sort of. The thing is, I know my daughter’s needs will end, whereas for so many parents of special needs children, they will face life-long challenges. My daughter, Lou, was born with a surprise complete bilateral cleft lip and palate. In hindsight, it was actually perfectly clear on the sonogram if you knew what to look for, which my wife and I did not. We would have expected our midwife to catch it, or our radiologist. Sadly, it was missed by all.
My uncle was born with a cleft lip and palate, but only on one side. This was in the 1950s, in Pakistan, where my grandfather was working for some kind of NGO. The story that was passed down to me was that by the age of three my uncle was still just babbling and not able to really form words. Doctors told my grandmother that because of the cleft my uncle would never learn to speak. It turns out he was just speaking a very obscure dialect of Urdu, which he learned from spending 10 hours a day with his nanny. While my wife was pregnant with Lou I used to joke that she was totally going to have a cleft – imagine the shock when she then did.
Lou was born at home and it was our midwife’s 700th birth (and it just so happens that the instance of clefting is about 1/700). When we discovered the clefting, none of us, including our midwife, knew what to do. Within two hours we were at our pediatrician’s office, and an hour after that we were at the cleft clinic open house at our local hospital. We were lucky that Lou had been born on cleft clinic day.
We were immediately able to meet the entire team that would be responsible for her care for the next 18 years. Everyone who came in with her chart (case manager, surgeon, audiologist, speech pathologist, ENT, geneticist) did a double take when they read that my wife had just delivered our daughter three hours prior, and was sitting there asking questions about Lou’s future (they don’t know my wife is a super hero).
All of the specialists kept using the phrase “severe facial deformity.” That phrase was a lot to take in, especially since our daughter was so cute. The worst part of the trip was learning that Lou would not be able to nurse. The best part was discovering that fact early and being given the special feeders she would need.
We took our daughter home and immediately nicknamed her “Zoidberg” (after a character on the show “Futurama”) because my wife and I use humor to cope with stress. People hear about her cleft and the first comment we usually hear is, “Oh, well that’s no big deal, they can fix that now.” They are right. Sort of.
The clefting is a relatively easy fix, especially compared to the way they used to do it in the 1950s, all at once and right away. I assume they dealt with the secondary issues later, but I don’t really know. No one in my family seems to remember.
My daughter will have totally normal function by the time she is 20. She will always have a scar and she will never have Cupid’s bow. There is a part of me that will always wonder if it would be easier if she was born a boy, as boys may have an easier time looking a little rugged. Peyton Manning had a cleft, he’s not considered ugly and I bet you didn’t even notice (you can hear it in his speech if you know what to look for). But I know my daughter will be fine.
Lou will need an additional three or four surgeries on top of the two she has already had. All told it’s a lip closure, palate closure, nose job, jaw realignment, tooth insertion or removal (depending on what her teeth do), and a possible palate lengthening (to help with speech). After all of these procedures, she will be fine.
If it seems like a lot, it’s because it is a lot! Seeing your three-month-old baby come out of anesthesia with a huge scar on her face is not fun. Having to do it again seven months later is not fun. The surgeries made feeding complicated – well, more complicated. When you add to that the fact that my wife was hell-bent on only giving Lou breast milk for the first year complicated things further. My wife was pumping eleven times a day at first, for 40 minutes or more each time. She later reduced that to about eight times a day. Still, that meant that not only did we have to plan every outing anywhere at any time around her ability to pump, it also meant that even when she was at home she wasn’t available half the time. This was also especially hard on our two year old son. The act of that much pumping was incredibly draining for my wife, both physically and emotionally. She happily nursed our oldest for two years. Pumping for twelve months was not nearly as rewarding an experience as the act of breastfeeding our son was.
I know this may read to people who have experience with special needs children as, “being inconvenienced,” or, “not being the same as really having special needs.” You’re right. But there’s more: Lou qualifies for and requires special services. She’s had free in-home speech therapy through the county. She’ll have IEP and qualify for early entry services in public pre-K. This means dealing with the admin side of having a special needs child – lots of meetings and follow up meetings. She faces scrutiny in public, from honest comments by other kids, to ignorant comments from adults, to teasing on the playground. Luckily all of these have been rare so far, but I worry about her going to school. Still, by the time she’s 20 she’ll be totally “normal.”
That is why it feels like a ‘cheat’ and why I feel guilty saying that my daughter has special needs. Even though that fact is true right now, that label is going to end, and in the end I know she is going to be fine. Meanwhile, I know people who have kids that really have special needs: kids who have had open heart surgeries within minutes of birth; kids who eat through tubes; kids who have cognitive or neurological issues that may not ever go away. Unlike the parents of those children, I won’t have life-long fears for her. Her situation isn’t life threatening. With a series of painful and invasive medical interventions she’ll grow out of it.
So whenever I think about the things Lou needs that my other kids don’t, whenever I schedule a determination meeting or register for support services I feel a little guilty. I feel like there should be another category for people like us, for people who have short term needs. I wish there were a category that didn’t make me feel like I was disrespecting the struggles of other parents who don’t have a light at the end of the tunnel. I know their struggles firsthand, and wish everyone had their “light at the end of the tunnel.”
Photo: courtesy of the Author.
Originally appeared on An Interdisciplinary Life. Reprinted with permission.