Honestly, I've been dreading this post. It has been building for a few days. I need to talk about cleft lip and palette in honest terms for those considering adopting a child with this "need". Also check out the Yahoo group for cl/cp, medical websites and seek out other parents/adults dealing with the issue.
Everyone says it is "fixable", its just a surgery. These statements are correct ,but incomplete. it is fixable with work, time and multiple surgeries. I'm not a physician or a speech therapist, so I'm going to talk in simple terms with the incomplete knowledge I have at this time. I encourage parents with greater experience to add comments to this post!! And if I present any errors, I will edit over time.
Here it goes. The palate in simple terms is the roof of the mouth. In kids with cleft palate, the palate has not formed completely, meaning that the roof of the mouth opens freely with the nose cavity; defacto the roof of the mouth is the top of the nose cavity. This creates the ability to shoot food out your nose. Which seems highly functional and fixable. However, in closing the palate, it also creates the ability to stop air movement as well as food movement. This stopping of air is necessary to create sounds like "b", "p" and "ch" among other sounds. If the palette is connected but a lot of scar tissue is formed, the palette may become stiff making it difficult to make some sounds. Unfortunately, we won't know how strong and how flexible the palette is until our son starts speaking and we can evaluate the sound.
The muscles and palate involved in creating sound developer according to a variety of stimuli, including sucking, eating and talking. But guess what, kids from orphanages often have been bottle propped, which means they may not know how to suck. Furthermore the older kids are likely ate traditional Chinese baby/toddler food, congee, which is very soft, so soft they haven't learned to chew. Children in an orphanage are unlikely to have great one-on-one interaction to create the ability to mimic speech. Finally, English is very different than Chinese in which parts of the mouth are used in speaking. In totally, the muscles involved in speech and the palate are unlikely to have been exercised in the manner necessary for English.
Now lets talk about what happens today when a child in the US is born with cleft lip and palate (cl/cp). First a plastic device s fitted in the gum gap to close it. Then surgery occurs to close the lip, gum and palette, all well before the age of one. Well before the time the child starts talking, the muscles and palette are complete. There may need to be revisions for cosmetic or scar tissue type reasons. When the baby teeth a vigilant what on the teeth pattern/placement begins. Is the bum line holding? If not more surgery when the adult teeth start to show on the x-rays. A bone graph from the hip may be necessary. Orthodontist work is likely necessary, braces will be tough to avoid. bone graphs are usually done around ages 6-9. A bit of hip bone is put into the gum line so the permanent teeth have a place to anchor. Finally, after all the facial bones are done growing (think 16-18 years old) the final revisions are possible. From the extreme end this may include breaking the jaw to correct an overbite, or on the more mild end just a bit more cosmetic work.
Now lets note what's happening in China. The lip is corrected, sometimes the main palette is corrected, but almost never is the gum line corrected. The lip around a year, the palette anytime between 14 months and 5 years. The desire in China to do big surgeries on little babies is lower. Due to the lack of gum line correction, there may be a slight hole at the gum line. The gum is unlikely to be repaired until closer to 4 year old, when the complement of teeth are in. Due to the lack of early intervention on the gum line the surgery at age 6-9 to bring in bone is an almost certainty. The correction for overbite in the teen years is still hit or miss depending on the specific child's development.
So, yes, everything is fixable and correctable. But the reality is this is a 4+ surgical process that won't be complete until the kids are 18 or so years old. As a prospective parent, this means you must have the means to pay for surgery and/or the long term prospects for good insurance. It means early intervention (from the beginning) on speech therapy, that may continue for many years.
I don't want to scare prospective parents off, but cl/cp is not a birthmark that once removed, the process is completed.
I have a very dear friend, who is the age of my parents. When I told him I was adopting, he was over the moon. I went on to explain the child was a boy, with cl/cp, my friend went silent. Over the last 11 years of our relationship he had never mentioned that his currently 25 year old son was born with sever cl/cp. My friend simply said, "do you know what you are getting into?" I explained what I knew. He agreed, its all correctable. Then set up dinner for me with his son. His son is a typical 25 year old. The scar really is not noticable. Frankly, he thought it was amusing that I even wanted to chat about his perception of life with cl/cp. He knew no other life and the cl/cp stopped him from nothing except for sports for six weeks each time he had to have a surgery. This young man had severe case with the overbit revision at 16. Even at 25 he still has a slight hole in the back of his palete, but no real speach impetament. At the end of dinner, I knew it was fixable, but its not simple, it takes time and energy, over many years.
Frankly, I believe we all have issues that take many years to resolve. I prefer knowing what one of the big issues is form the start, i.e., cl/cp. But, this will not be the only issue. Like all parents, we'll have to figure out how to deal with peer pressure, teen hormones, drugs, sex and educations, let alone potty mouths and potty training. It seems to me like cl/cp is more straight forward than any of the others. This is why when the referal came in I said "yes, this is a challenge we can address".
Video with the Girls
14 years ago
1 comment:
This is a great post, and one every PAP should read before adopting a child with cl/cp. I think that it is often presented as just "one little surgery" and there is,obviously, so much more to consider.
On a more positive note, though, I have found that a lot of the adopted children I know who are cleft affected are often very emotionally healthy (indeed, often they have less emotional and psychological issues than the children I know who were adopted through the "traditional" NSN program). My own little theory about this is that a baby who is cleft affected actually cannot be fed with a propped bottle. A baby who is cleft affected needs to be held and monitored while they eat because of the possibility of them choking. And this means that, unlike a lot of the other institutionalized children, children who are cleft affected are actually getting some real human contact - being held in someone's arms - several times a day. I think this is huge in terms of the psychological repercussions for our kids.
Also, I would like to point out that the surgeries are daunting, but they are basically small chunks of time in an otherwise long life with your child. I really don't think much about my daughter's cleft issues on a day to day basis. Any differences in her because of her SN are so tiny compared to her every day persona of being a normal two year old. She gets speech therapy, that's true - but then, so did my bio son, who is not cleft affected. And speech therapy is nothing to be afraid of. In my experience, it's some nice person coming into your house once or twice a week to play games with your kid. Both of my children LOVED their speech therapist.
We have incorporated sign language into our every day conversation with our child - just to allow her the broadest possibility of being understood - but again - that has been a pleasure to learn (I highly recommend the Signing Time dvds) not any kind of burden.
I think that often PAP's who have decided on adopting a child with cleft issues do expect it to be, exactly as you said, like a birthmark that once removed won't have to be thought of again. I remember being quite surprised when I realized the extent of the surgeries (and potential surgeries) that my daughter would actually need in her lifetime. But over all? It's not the kind of SN that you think about every day. Or even every week. Or month. And, like all parenting, it takes a certain level of commitment - but (assuming you have adequate health insurance) it's nothing to be afraid of. Parenting in general can be hard, no doubt about it - but the issues that arise from my daughter's CL/CP are merely a blip in the rest of my parenting experience.
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