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Charles 'Story

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I was 5 months pregnant when we found out that our son would be born with a cleft lip and palate.

My whole world came to a standstill. I had worried about Spina Bifida, Down’s Syndrome, Club foot but Cleft Lip & Palate was never on my mind.

I immediately thought of a boy in my school who did have a ‘hare lip’ it looked awful! I could not image my son looking like THAT!

After the diagnosis we were immediately put in touch with Jane Sibley from the Cleft lip team.

She tried to assure us that it was not that bad. I heard her but was not listening.

We met a couple of days afterwards and she showed us pictures of before and after the operations, mentioned support groups, CLAPA camps etc.

None of it really helped. I am not sure what I would have done if somebody had mentioned the word abortion. But at 5 months pregnant it was too late anyway and we had tried so long for a baby. I was devastated! Blamed myself, looked for reasons why etc.

Dave went onto the internet and did extensive research. He was my anchor, Dave re-assured me that we will handle this as well as everything else, explained everything to me in detail, made me listen to him.

Looking at it now it is interesting to see how men and women generally reacted when we told them about Charles' condition. The men were all very calm and said that this was fixable. All the women reacted way more emotional.

We decided that we would tell our family, friends, people at work etc. I did not want anybody to be surprised when they actually saw him. Prepare work for things to come. I did not want to hide him. Dave was a little worried that I would hit somebody while out shopping if they made a comment or just looked at Charles funny.

The due date came closer and I decided that I would like to have a c-section. Flo’s due date was Friday 13 June and I was worried that if he came late nobody could look at him to assess him, show us how to feed him if everybody was in the weekend. I felt much better being able to give everybody concerned a date for their diary. Dave smiled at me and thought how German!

So, the 6 June came and we had a beautiful, slightly odd looking boy. His cleft was very big. One nostril pulled to the side. The gum came out as he always had his fist in his mouth and forced it outward. Otherwise his was perfect. He kept sleeping on his “bad” side so that you could not see his cleft lip and he looked perfect.

Jane came and admired him duly.

She showed us how to feed him with the softplas bottles from CLAPA. It did not take long at all and was not as difficult as I had imagined. All my worry for nothing. Charles was a good eater. The mixture of all kinds of breastmilk (from various other mothers as I did not have enough) and SMA did not seem to bother him at all.

He was like any other baby. The bottles did not look as pretty as my friends bottles but who cares. In a way it was easier to feed Charles as he had no choice but to drink as we squeezed the bottle and because of this it did not take as long.

He saw Fiona Nixon the Orthodontist when he was three days old and had a plate made for him. This was to push the gum back and gave him additional help with the feeding as he could push the teat against something.

Everybody in the John Radcliffe was very helpful, supportive and assured me everyday that he will be a very handsome boy after the operation.

We took him home and compared him to the babies of my friends from the NCT – he was just very normal.

We had no problems feeding him. Sometimes milk came out his nose when he sneezed. We had to clean his plate every day as it was quite dirty at the end of the day.

Charles had a couple of ENT appointments. Just check ups and hearing tests. Everything was fine.

Mr Goodacre, the plastic surgeon, looked at him a couple of times and explained the coming operation to us.

The 12 weeks passed quickly and the day of the operation was here.

We had booked a room for us at the hospital. Dave took Charles in the night before as I could not handle the thought of having to put the mask on Charles for the anaesthetic. Thanks goodness Dave saw it a little more rationally. I showed up at the hospital just after the operation. Charles looked dreadful. His face was swollen, he was in pain, the nose looked somehow odd. I felt so sorry for him. All I wanted to do was to hold him, take the pain away, tell him that everything will be ok. That is what we ended up doing. The nurses kept him drugged up and I believe the pain was not too bad. Dave and I held him for days only at night he was put in bed. To my surprise he drank his milk almost immediately. The time was not easy but I do believe it was worse for us then for Charles.

Walking around in hospital I became very aware of the fact that we actually were the lucky ones. Cleft Lip& cleft palate, unilateral or bilateral, IS fixable. The things I saw in hospital made me very grateful, very humble. What did I complain about?

We took Charles home and followed all the advice which we were given at the hospital.

The only difference was that I put a crème called ‘Bepanthen’ on his scar – much to the amusement of Dave who smiled at my “German crème” but did not say too much.

We massaged his scar with the crème twice a day.

I took him back to JR to get the stitches out and we continued to put the crème on. It healed really nicely.

Charles went to nursery when he was 6 months old. I showed them the bottles and how to feed him and that was really it. They never had any problems with him. No special arrangements were made. That changed a little later as the other babies moved on to more solid food. We were told by Jane to keep him on “lump free” food till the next operation when he was 9 months old. That meant that we took 4 months baby food to nursery instead of him eating what they provided.

The second operation was due in February. We made the same arrangements as last time. Dave took Charles into hospital again and I joined them a day later. Again he looked sore but not as swollen as last time. He did eat and drink very quickly and we were discharged after three days(!!!). Mr Goodacre was impressed and so was Jane.

We took him home and followed the advice given as last time. I had taken 3 weeks off work and slowly introduced him back into nursery during the last week. He was not allowed to eat any breadsticks and such like for at least one month.

We waited a little longer and started to introduce lumpier food. Charles did not like it very much and was definitely behind his peers. He only still does not eat “normal” 16 months old food when he is tired. We end up giving him 7 months old food. But that is really the only difference I can think of in comparison to other children at the same age.

He is now 16 months old and is behaving like any other child is/would.

Charles is eating very well. Can now breathe much better through his nose and has learned that he can open his mouth to be able to breathe at night when he has a cold.

People do not usually see or notice his scar. I do not go out of my way to tell strangers about Charles' cleft lip & palate. We do not treat him any different.

This is the first time that I looked back.

It was more difficult to remember than I thought and we did not really have any major problems to overcome. The only thing which was really difficult was his breathing especially when he had a cold, which is 95% of the time as he is in nursery. I called Jane more often than I am willing to admit and I am sure that her patience was coming to an end. But she was/is right, he will grow and so will his airways. It already made a huge difference.

I know that Dave and I will be eternally, and I do mean that, grateful to the team at JR in Oxford. The handy work of Mr Goodacre made our son’s life normal.

Jane & Debbie were always on the other side of the phone if I needed to talk to someone even if it was not related to cleft lip & palate but only to get advice on e.g. sleeping.

I cannot say enough: THANK YOU!!!!

Jo Inman

Before the operation
12 months old