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February 2003

Bilateral Cleft Lip and Palate
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When my husband, Chris and I got married one of the first things we do was to try for a baby. Everyone seemed to have them! My younger sister had a little boy, friends relations all kept asking and conversations usually centred around so and so being pregnant and so and so had a 8lb girl. So we tried and tried, visited doctors, specialists but nothing happened. I had a laperoscopy to check for any problems, they found none but a month later I was pregnant.

On March 6th 1996 I went into a slow, painful labour, I had drips coming out of each arm, specialists popping in and out telling me if I didn't dilate soon then they would need to do a caesarean. This seemed to spur me on and at 7.30am March 7th Joshua David was born a whopping 9lb 7oz. At first the Midwife didn't say anything but passed Joshua to me and I said "He has a hare lip" incorrect but it
cleft lip and palate help book with pictures from the 1960's, which frightened me more than anything. They told me I would not be able to breast feed, they didn't say I could express; Joshua would need to be tube fed in Special Care. Then they took him away. This was the only point when I actually cried. It wasn't the fact that he had a cleft it was that someone else that I didn't know and therefore didn't trust was taking my baby away.

A cleft surgeon arrived from Alder Hay children's Hospital in Liverpool, fitted Joshua with a plastic plate for his palate and told us he had a Bilateral Cleft lip and Palate, he asked us some history questions and explained about future surgeries and problems. A lot to take in and the pethadine hadn't worn off! With the plastic palate Joshua could use a bottle, he was the largest baby they had had in the SCBU for a long time. He was in SCBU for 7 days and then we took him home. I was very, very protective of Joshua, I wouldn't let anyone feed him or wind him for several weeks. This didn't stop us from going out, people stared at him and I tended to stare back at them. One thing that did upset me was the health visitor suggesting we come to have Joshua weighed at 3.30pm after all the other mothers had gone. We weren't sure if it was to save our embarrassment or theirs. But at 1.30pm the next day as mothers were lined up outside we arrived and queued up with them. I was never embarrassed about Joshua's cleft; I never felt I had to hide him away. He went everywhere, pubs, shopping, social get together.

Joshua had his lip repaired when he was 4 months old, we missed the big smiles we used to get but his first smile with his new lip was fantastic. He had
wasn't something we had seen before, we had no idea what it was, what we would do.  All I did know was that this little boy was ours. The midwife hadn't seen a cleft before and was of no use for advice, I had a few problems and it was suggested I had a blood transfusion but this meant time away from Joshua and I declined. I felt very weak, I couldn't even reach over to pick him up after the midwife had left the room and Chris had gone home for some much needed rest. I wanted to pick him up, change his clothes, and count his fingers and toes. The special care unit team came to see me and showed me a
splint on his arms to stop him catching the stitches and the operation area looked very sore, but he took it all in his stride. After a few months we took Joshua's plastic palate out, this was our decision as he seemed to feed better without it and the tape being used to hold it in was marking his face. His palate was repaired when he was 14 months old, just before his brother Jordan was born.  When they repaired it they had to leave 2 small holes, initially they were worried about food escaping but Joshua seems able to control this. He has had grommets fitted, but his hearing for the past few years has improved and we no longer have to go for hearing tests. He has speech therapy, I am not sure if its of any real use. The system here in the UK for speech therapy is less than perfect. There are so many kids waiting and so few therapists that the waiting lists are very long. Joshua has an 8 week course and then he goes back to the bottom of the list. It can then be 8 months before he gets to the top again.
We see the cleft team once a year and the next big thing will be the bone graft when his adult teeth arrive. But Joshua being Joshua will take it all in his stride and get on with it. He loves school, other kids have noticed his lip but it hasn't fazed Joshua in any way. I am chairman of the PTA and very involved with school. I'm involved not only to help the pupils but so that I know if anything is wrong and I can approach the teachers easily.  He does have some problems with speech but I find that it's the adults that tend not to listen closely enough rather than the cleft causing the problem. He loves Power Rangers and computers; he is polite, always happy and has tons of confidence.
We worry about his future, bullying especially, he knows he is different, he knows he has had operations and had more to come. We took a lot of pictures of him when he was a baby so that he understands what was wrong. He doesn't find many things a problem and gets on with what life throws at him but that's Joshua Mr. Laid Back Little Man!
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