Leah’s Story

February 2, 2011

Up until my 20 week scan my pregnancy had been completely normal. As Leah was my first child, I was probably very naïve when I went to my 20 week scan as I was just excited about finding out the sex of my baby, I didn’t really give much thought to any complications that could arise as my 12 week scan was fine.

When myself and my partner went in for the scan, the first sign of something not being quite right was when the lady said that the baby had her hand over her face and she couldn’t see, she told us to go sit in the waiting room for ten minutes. She called us back through and started the scan again, she said that there was still a problem and that our baby “didn’t have a top lip” (that was how she so sensitively put it!). After that we were ushered into a small side room and given a box of tissues and some leaflets. At this point I was sobbing and I can’t really remember much apart from my partner saying “it’s not that bad” and pointing to various pictures in these leaflets.

A couple of days later we were sent for a detailed scan in Nottingham, we met the Cleft Team and were given a lot more information and the opportunity to ask questions. On the detailed scan they could see that our baby had a unilateral cleft lip and palate that was quite wide. We were offered an amniocentesis as the risk of downs syndrome and other chromosome problems was slightly higher now that our baby had a cleft. But because my blood tests had come back at a very low chance of downs syndrome, we decided against having this done.

We then sat down with the Cleft Team and discussed all of our concerns. Having given so much thought to how my baby would look I hadn’t really though about the practicality of it all e.g. how our baby would feed! We were shown the bottles and teats that we would most likely be using and told how we would need to squeeze the bottle gently as the baby sucked. It was also explained to us when and where the surgeries would likely take place. They also told us about other complications that cleft babies/children sometimes are affected by, she would need regular hearing tests as cleft children are prone to glue ear, she would probably need speech therapy or at least a speech therapy assessment and after her surgeries she would need regular clinic appointments.

We went away from this appointment feeling a little happier now we had a lot more information. But it was still a big shock for us both and I personally felt very guilty as if the cleft had been my fault and as if I had done something in my pregnancy to cause this. I later realised that there was probably nothing I could have done to prevent this from happening.

We had little involvement with the Cleft Team for the rest of the pregnancy, I did have some nurses come to show me how to express my breast milk when I was near the very end of my pregnancy and I froze some of this in preparation for Leah’s birth.

parentstories-leahmae01 On 23rd May 2009 at about 5am Leah Mae was born, I had no complications during labour and managed a natural birth, she weighed a healthy 7lb 3oz. Although she did look very different and her cleft was very wide she had beautiful big blue eyes and lovely wisps of fair hair, she was perfect to me.

As Leah was born at the weekend the Cleft Team didn’t come out immediately so we used up the breast milk that I stored and then went onto formula feeding with a normal bottle and teat as my breast milk had dried up on the 3rd day. Although Leah did manage to feed with a normal bottle and teat for a few days, she couldn’t have continued much longer as she was only getting very small amounts and was tiring easily from trying to suck very hard.

Once we were shown how to feed with the squeezy MAM bottles and had a go at it ourselves a few times, we were allowed home. Once at home we soon settled into a routine although feeding was not as simple as I thought it would be and Leah would take on board a lot of wind due to her cleft. We could sometimes be feeding and winding for a good hour and a half to two hours, then she’d sleep, then we’d have to do it all over again. It was very tiring, but I suppose all newborns are!

I was very apprehensive when I first had Leah and wasn’t very comfortable taking her out and about for the first couple of weeks. When I finally plucked up the courage and started taking her out, the reactions were mixed if people saw her. Most people would simply just look and look away very quickly without saying anything, others would stare and some would come over and say things like “ahhh bless her, when is she going for surgery?” or “my cousin had a baby like that” or “my friend’s little girl was born like that, you can’t tell now”. But after a few weeks I stopped seeing the cleft and just saw my little baby and I would wonder why people were staring, it was as if I had forgotten it was there.


Leah right after her first surgery

On 15th September 2009, Leah was taken for her first surgery. The hardest thing was when the gas mask was held over her little face and she just went limp in my arms. She was down for about three hours and she had a lip adhesion and her hard palate repaired. She looked so different when she came round, her big wide smile had disappeared and her face was swollen, I cried when I saw her!

We really struggled after the surgery for a couple of weeks – she would not bottle feed at all. I think at first it was painful for her and then she became afraid of the bottle, we had to start feeding her in her sleep! We were allowed home after a week and then we struggled on. But after another week or so she picked up and we started waning – which was much easier than bottle feeding.

After this we just got on with life as normal – Leah weaned well, she started nursery and settled in well and feeding her was no different from feeding a normal child – except we still had the squeezy bottle for night time feeding and other drinks. She still looked a little different as she only had a lip adhesion and this left her with what looked like a very slight cleft lip, but I was only asked about this a couple of times and both of those were by other small children.

Leah a day after surgery

On 6th July 2010, Leah went for her second surgery to repair her lip and her soft palate. This time she was in surgery for almost 5 hours, I was very worried!! Again she looked different but it wasn’t as different as the first time around. We found this surgery much easier than the first one as Leah was actually able to eat! (although we did have to go back to pureed food!). We were soon allowed home and everything returned to normal

Leah is almost 2 now and is a happy healthy little girl. She has regular check-ups and hearing tests and she is starting speech therapy soon, although she can say quite a few words. We still have surgery ahead as she will need her teeth sorting out when she is older but, for now, we can relax!

Although I was devastated when I first found out about the cleft, it hasn’t been as hard as I thought, she is now like any other child and I wouldn’t change her for the world!!!

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