My newborn needs help

The day after the birth, Cathy visited us at the maternity unit and told us that we would see the cleft team again shortly. Two weeks later we were officially told what we already knew. Jonathan had a bilateral cleft lip and palate; his lips and the roof of his mouth hadn't grown together as expected and he would need several operations to put them back together.

The first operation at around three to four months would take care of one side of the cleft lip and hard palate and then the same procedure would be done to the other side a couple of months later. At around eight to nine months the soft palate would be repaired. Jonathan might also need a lip revision operation at the age of four or five years, and a bone graft at nine or ten years.

On the day of Jonathan's first operation, we took him down to theatre at 9am and I held his hand and sang to him with tears in my eyes as he gently went to sleep. We went to the canteen in the hospital grounds. I was in a daze. Of course I imagined all kinds of things going wrong.

Then we got the call to collect Jonathan from the recovery room. I heard him crying half way down the corridor - he was angry, hungry and sore. His face looked like he'd been in a boxing match. I was so scared to pick him up as he had all kinds of wires and a drip attached to him. I kept asking if he was alright and I was assured that he was fine. I cried tears of relief that he was out of surgery and the operation had been a success. We were allowed home the following day.

We quickly got used to Jonathan's new face. Some days I thought he hadn't changed very much but I would look at his 'before' shots and realise he had changed a lot. But he was still my boy.

The second operation took place three months later. Jonathan sailed through it and even smiled at the recovery nurses less than an hour after surgery. This time it was a very tight smile - he really did look different. We took him in for his third operation on 4th February 2004. But Jonathan had a cough and the following morning the anaesthetist decided that it was not a good idea as there was a risk of pneumonia so we came home.

Jonathan has just had another operation, which went very well. We're hoping to have a few years free of hospitals when we can just concentrate on being a normal family. I feel so lucky that we have come this far. I don't know how I would have managed without the support I received from CLAPA, the parents' group especially, and my iVillage friends from the Mums of Babies Due April-June 2003. The really wonderful thing is that I've made so many good friends as a result of Jonathan having a cleft.

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