Written for Prescription Parents.
Other Internet Resources Related to Cleft Lip/Cleft Palate
To see Behind Locked Windows, a novel written by Michael Seltzer (the subject of this article) go to www.seltzerbooks.com/window1.html
Seventeen years ago I became a parent -- again, but it could have been for the first time -- so many things were different and new. The experiences I lived through helped me grow and mature as a person. Having Michael taught me the true sense of responsibility. A child came into the world who needed me and showed me what courage is.
Mike is my stubborn one, the one who won't be told what to do. He is an extremely private person, but he also is my child with a heart. He's the one whose life has been most out of his control. He would get involved with sports, but have to stop for fear of hurting his repair. He was teased when young because he looked different and talked different. He always had operations and speech therapy and occupational therapy and orthodontics to look forward to.
Seventeen years ago June 14 my son was born. Michael was born with a complete bilateral cleft lip and palate. My new life began.
Michael was born on his due date. He was eagerly anticipated by his brother Bobby, aged 5, and his sister Heather, aged 3. I had had an ultrasound earlier in the pregnancy because the doctor feared twins. I was so big. But there was only one baby - no problems were noticed, except the doctor thought it would be a big baby.
My water broke while I was helping my husband build a fence. I felt silly going to the hospital with no contractions. Less than one hour later and two major painful contractions, out came Michael. He was 6lbs 8 ozs. So much for a big baby. I actually had a big umbilical cord!
Since there was no time to go to the delivery room, I didn't think anything when they took the baby away for a few minutes, but then the doctor came back with a serious look on his face saying Michael had a birth defect, a cleft ( A cleft occurs when parts of the upper lip and/or palate do not grow together. The tissue is all there, but there is a gap.). My husband and I had never even heard that term before. The baby was taken to the Special Care Nursery. I visited him there, but could not breast feed him. (He really didn't need to be in the Special Care Nursery. That was where the nurses knew how to feed him, but he didn't require any other special care.)
When I finally saw him, I was amazed how small he was. He had (and has) beautiful large blue eyes and was perfect, except he had a gap between his nose and mouth. It was like a little button. Over the next two months, the family became used to it. It was part of Mike and he was awfully cute.
It took a long time to tell people that Mike had a cleft. While in the hospital, I could cope with telling only one person a day. The doctors painted a bleak picture. They mentioned a heart murmur ( They didn't mention that a lot of babies are born with murmurs that go away). The surgeon said it was one of the worst cases of cleft he's ever seen. I cried the most I ever had or ever would.
Experts told me Mike would be a difficult baby - hard to feed, hard to get to sleep, fussy. Experts mean well, but they are not always right. Mike slept through the night at two weeks and was on a schedule of 4 meals a day at 3 weeks. He was the definitive easy baby I could take anywhere and did. He could not suck because of the cleft, so I could not breast feed him or even use a normal bottle. At first, only a few family members learned how to feed him his formula from a "brecht" feeder, which worked like a turkey baster. Later, after he began cereal, he got the bulk of his milk through a spoon and feeding became easier. A musical swing could always get him to go to sleep.
When I took him out and people would ask about his face, I freely told them it was a cleft. It was my way of educating the Public.
He had his first operation at 8 weeks old. One side of the lip was repaired. Just before he went into surgery, I wanted to stop the doctors and cancel it. He looked great to me. But I knew it wasn't realistic. He needed the operation done. The hardest thing for a parent is to see your child after surgery. Mike's face was all bloody and bandaged and he was in a mist tent. He looked like he had been on the losing side of a fight.
You learn to cope and live through things. You stay at the hospital, commiserate with other parents, and realize your son has a repairable problem, long, ongoing, but repairable. You're so lucky compared to others.
Mike had four surgeries before he was one year old - one side of the lip at 8 weeks, the other side at 4 months, the columella ( and one undescended testicle - we try to get the most for our money) at 9 months, and the palate at 11 months. He was tied down with a "strait-jacket" (so he couldn't touch the stitches) and hospitalized for 1/4 of his first year. He developed a dislike for doctors.
Children born with cleft lip/palate tend to have ear infections and require tubes. Mike's first set was put in at 11 months, the second was put in at day surgery when he was two. They lasted (some sort of record, I'm told) for six years. He didn't need them after that. But for the first eight years of his life, he had to protect the ears from water. He wore ear molds and head bands (to keep the molds in) when he took baths or went swimming.
Michael had speech therapy and because his arms were tied down for so much during his first year, he needed handwriting practice. Mike also had a learning disability called Sensory Integrative Dysfunction, where too many things going on can overload the senses, that required occupational therapy. He still to this day paces when he thinks.
When Mike was 13, he had his first bone graft - bone marrow from his hip to his gum. He had a second graft at 15. His doctor is quite pleased with the results. At 16 he had his nose reconstructed and a deviated septum corrected. His orthodontist wishes Mike would brush more, but he's a teenager! What can you do? He will need implants and several new false teeth in the next few years, and his jaws may have to be moved.
Through all this Mike has been a "trooper." He has never fought me about the surgery. He stoically endures pain and puts up with the limitations the operations bring to his life. He doesn't complain or blame or ask "why him." He just copes. He's amazing. I've asked him how he feels about having a cleft, but he won't say. He says he doesn't think about it. It's his coping mechanism, I guess.
How have I coped? When I first had Mike, I wanted to learn everything I could. I read everything I could find and joined Prescription Parents, a local support group. I went to their meetings and talked to other parents of newborns. I went to lectures by the professionals. I lived day to day. I coped.
I tried to figure why it happened. Was it my fault? My husband's? Our genes? The Environment? We don't know. One child with a cleft is born for every 700 births. It might be a one-sided cleft (unilateral) of the lip or both sides (bilateral). It might be with a cleft of the palate or without. It might be just a cleft of the palate. No one knows what causes a cleft, but all the usual suspects are suspected. It's no one's fault. It can be inherited. You can't protect against it. It just happens.
Mike is now 17, a senior in high school, the school treasurer, has his own car, a part-time job, and takes the phrase "independent" to an extreme. He has more surgeries to endure, but he's his own person, and, if you can take a mother's word, a good looking kid.
He's a teenager who drives me crazy, but I'm very proud of him. Do I wish he never had a cleft? Of course. But given that the past can't be changed, I watch him grow and mature and come into his own. He's lived through a lot (character-building, so they say), but he's okay...........So, am I.