Bridging the gap...

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Tristan

I would like to start our story by saying that I’m a very happy and lucky woman to have my husband and our precious son Tristan. I would never wish to change anything that happened in my life as it has helped us all to become who we are now.

Like many young couples, we decided to start a family and I became pregnant with no problems. I felt well throughout my pregnancy and was able to work until I was 36 weeks pregnant.

We were so excited about our 20 week scan and to see our baby – and to know if we were expecting a boy or a girl. Not that we cared about the gender but we were very curious and really wanted to start searching for the name and do some shopping for our baby. And then..... “It’s a boy!!” Excitement and smiles in the room!
Then the doctor became silent for a while, was looking at his screen and seemed to be measuring something several times. We didn’t take much notice as were preoccupied thinking of our baby boy, but it was obvious the doctor was double checking something. He told us that it looked like our baby had a cleft lip - had we ever heard of cleft lip or palate? No, we hadn’t! Apparently some very famous and successful celebrities and actors had it, we just happened to be unlucky. He explained that we wouldn’t know whether there was a cleft of the palate until after the birth. I didn’t understand anything at that moment, it was a mix of emotions and we both broke down in tears at home as the future was so unknown.

I felt sick for the first and only time in my pregnancy. I had an amniocentesis done as we were told that with cleft lip/palate there is much higher risk of the baby having Down’s syndrome (we now know that this is not true). We had been told that there was a risk of having a miscarriage after this procedure, and it was one of the most difficult decisions I had made in my life as we of course didn’t want to lose our baby.

We also did another ultrasound to check his heart. All seemed to be ok, which was the most important thing.
I really didn’t know how we would both feel when we saw our baby boy for the first time. We wanted to prepare ourselves for whatever might happen, and the CLEFT and CLAPA websites helped us a lot with information, stories and pictures. I bought some special teats from CLAPA just in case I was not able to breastfeed our baby.

Like many parents in our position, we thought “why us, why our baby?” Then we met Mr Brian Sommerlad who specialises in the treatment of cleft lip and palate. We were referred to him by our brilliant gynaecologist consultant Ms. Julie Price from The Portland Hospital. We met the whole cleft team, who were all there to help us and to answer any questions we might have - now and in the future if our baby happened to have any problems with hearing, speech, teeth, etc.

Mr Sommerlad showed us photographs of the different types of cleft and it struck us then how LUCKY we were as our baby had only a one-sided (unilateral) cleft lip without a cleft of the hard palate.

My waters broke 2 weeks before my due date, and Tristan was born on 20th of August 2012. There was no cleft of his palate which was a huge relief. When we saw him he wasn’t different to us, he was just our first and only baby. We had shortlisted 2 names – Daniel or Tristan and had decided that we would name him when we saw him. Tristan suited him most as the name was enigmatic, different, rare and was just his.

At that time we could not imagine that our tiny baby boy was going to go through surgery, but we calmed ourselves by the fact that it was good that the surgery was at such a young age and that Tristan would not remember it.

Tristan’s operation was booked for 22nd October 2012. In three months we had got used to his beautiful smile and to us he just looked normal. I was able to breastfeed him normally, although he made funny noises while eating which made breastfeeding even more special.

On the day of the surgery we arrived at Great Ormond Hospital. Tristan was checked by nurses and had his operation later that morning while we were told to go out and have lunch/ coffee nearby. It was the worst coffee break in our life! We had a call confirming that the surgery was over and that it had gone well. By the time we came to pick him up he was awake and crying looking for us. It was painful for all of us… we spent some hours standing or sitting or walking, or singing, passing Tristan from one to the other and trying to reassure him. We were allowed to go home the same day as Mr. Sommerlad was happy with the result and there were no complications.

Five days after his operation, we took Tristan back to the hospital for his stitches to be removed. . There was one tricky stitch which was not removed no matter how everyone tried but we were reassured by Dr. Sommerlad that it would not be a problem and it disappeared in a matter of weeks. We had a follow-up 6 months after surgery and further checks when Tristan was 1 and 2 years old. We will have another one when he is 4.

I can’t explain in words what it meant to us to have the right people to call on for support and to have plenty of information to prepare ourselves to our first meeting with Tristan as well as his surgery. We are happy parents to a beautiful, healthy, energetic, intelligent and happy boy, we treasure every moment we had before and since his operation. We were so lucky to be in the UK when Tristan was born, as cleft care here is second to none and we wish with all our hearts that other families of children with clefts will be as happy, support each other and treasure every moment of their time together no matter what happens.

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