Sarah’s Story

March 13, 2011

Hi my name is Sarah and I am 28 years old, married, with two gorgeous boys. Ryan is 6 years old, and Lucas is 7 months.

In June 2009 I found out I was pregnant with our second baby. Everything was progressing well and I can recall the day like yesterday when we went for our routine 20 week scan. I felt particularly uneasy that morning, I can’t describe why but for some reason I knew thing s were not how they should be. It was a deep gut yearning in the pit of my stomach, maybe it’s mothers’ intuition.

The scan itself seemed to take a long time and I knew there was a problem, although it still didn’t prepare me for the news we were told. Our baby had a cleft lip and possible palate. My eyes welled with tears and the worst bit was I knew how many pregnant women were in the waiting room outside, knowing that when I walked out crying it was obvious that there was something wrong with my baby. I can honestly say that that brief moment was probably one of the worst. As no one in our families had a cleft lip and palate we went home and did what most people do, frightened our selves by looking it up on the internet. The pictures that I saw scared me, it was the unknown that was eating away at me. Within an hour of getting home I received a phone call from Giselle Murphy, our local South Thames Cleft Nurse, and whilst I was fighting back the tears on the phone I was met with a friendly reassuring voice, who explained what a cleft lip and palate was, and told me not to blame myself, which obviously I was, and she arranged to come and visit my husband and I at home.

When the first scan at Kings College arrived we were feeling really positive as we had researched information on cleft lip and palate, and realised that actually there were many more worse health complications for babies, and that thankfully it was something that was repairable through surgery. The scan itself took nearly 3 hours of in-depth checks and the whole time my eyes were filled with tears and I was almost holding my breath a s they looked him over. It was at this point that we were advised that Lucas had a borderline ventriculomegaly, which basically means he had increased levels of fluid on a section of his brain, and the outcome of this could result in chromosome disorders. This news obviously hit us hard, and we knew that I would have to attend many more scans. The team at Kings suggested I have an amniocentesis, which we rejected as we had already decided we would deal with whatever was thrown our way, and that no matter what happened we intended to keep the baby.

Giselle came to see us at home after our scan at Kings, and gave us some useful booklets which showed photos of the corrective surgery, along with how to feed a baby with a c left, which to be honest at this point had not even entered our heads. And after every single hospital appointment we had, which I can tell you was well over the national average, I could always guarantee that I would receive a phone call from either Giselle or Wendy within an hour or so of getting home. They were such a support to my family and I, always answering the many what seemed like silly questions that I had. I went through at least 8 more scans, and every single one of them still came back with the same conclusion, they didn’t really know what effect the ventriculomegaly would have on him, as we were not prepared to put him more at risk by having the amniocentesis.

I remember a real low point when I was about 32 weeks pregnant and thinking we could potentially have a baby with severe disabilities and what sort of implications this would have on not only my husband and I but also my son Ryan. But thankfully as I am a very positive person I was able to pick myself up pretty quickly, and my cleft team were always at the other end of the phone to discuss my concerns. My gorgeous baby boy Lucas was born on 30th January 2010 at 11.25pm weighing 8lb 8oz and only 2 days early.ParentStories-Lucas02

He was born with a unilateral cleft lip and palate, and after many scans of his heart, kidneys, brain and about six hearing tests it was finally determined that he only had a cleft lip and palate, which we were ecstatic about. We fell in love with everything about Lucas, his cleft just made him more unique to us. The paediatrician decided that when he was born he would be put onto a feeding tube. The cleft nurse arrived the following day to do all the necessary checks with a hope to removing his tube so that he could come out of the Special Care Baby Unit. This actually did not happen until a few days later, as being the little monkey he is he decided to fail the gag reflex test, but once he was happily taking from a bottle, Giselle bugged the life out of the paediatrician to ensure he was put onto the maternity ward with me.

Once the tube was removed I was able to start expressing for him, and I managed this for 5 weeks. It was a very amusing experience for both my husband and I when I had to plug myself in to the giant cow milking machine, as I liked to call it. But I can honestly say that although it made us laugh the double pump electric breast pump was a fantastic piece of equipment and allowed me to give my son the best start possible. Wendy and Giselle came to see us many times at home and she was amazed by how much weight he was putting on, who said that cleft babies don’t feed well? Ha ha.

In my experience people’s reactions to Lucas varied somewhat, and I can remember Giselle asking me when I was pregnant how I would handle the stares, as Lucas was obviously going to look different. But in my eyes he was a good different, and I certainly did not hide him away. I was proud of my gorgeous baby, and loved showing him off at every opportunity. Most people just don’t know what it is and I had members of the public coming up to me and just asking questions, which I did not mind in the slightest.

I can vividly recall one occasion where I was in the shop with both Ryan and Lucas, and a little girl looked into the pushchair and asked my 6 year old son what was wrong with Lucas nose and mouth. Ryan bless him completely matter of fact about the whole situation replied by saying that Lucas was born with it and he has to go through a lot of operations to make it better. My heart soared with pride, my beautiful son was protecting his younger brother and said it in such a grown up way, that I am not even sure I would have been able to answer the little girl in the way in which he did that day.

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On 22nd June 2010 at nearly 5 months old Lucas went into St Thomas Hospital to have his lip and hard palate repaired. It was the most awful experience of my life, I was sick with worry and I actually didn’t want him to have the operation done as I loved his smile and everything about his cleft. Nothing could have ever prepared me for how he would look after surgery. I just couldn’t possibly imagine him with a lip and nostrils fused together, and yet there he was so brave, although slightly bruised, but even through it all with a morphine drip attached to him, my little angel still managed to try and force a smile, even though you could see the pain in his face.

Lucas was discharged the very following day, after getting the all clear from his surgeon and cleft nurse. The next few days that followed were tough, and it was almost as if he had to learn to suck a bottle again, which was frustrating for him, although his interest in solids suddenly soared. His stitches dissolved so quickly and I remember looking at him one day about 4 weeks after his surgery and realising that the stitch at the bridge of his nose holding his nasal cavity together had dissolved and his nose had popped out! I ran round the house phoning everyone I knew telling them that Lucas had a normal nose, which sounds silly, but as I am sure you all know it just tends to be something we all take for granted.

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For a few weeks after the operation I would walk into a room and see my angel and the face that so lovingly peered up at me was not the face I expected to see, as I was just so used to his cleft. My fears were that I would forget what Lucas looked like when he was born, and his new smile would replace all my memories, but thankfully this has not happened and I have so many pictures of both my gorgeous boys around the house that I now doubt it ever will.

Both Wendy and Giselle came to visit us at home to check on Lucas’s surgery, and everything is going really well, we also went to clinic in August so that his amazing surgeon Miss Timoney could review his progress, and all Lucas did the whole time was smile and coo at her whilst shaking his head, which made me laugh. Lucas has a huge personality, and he often shouts at my husband and I if we do not feed him quick enough, and he is only 7 months old! He is into everything he shouldn’t be, and I have had to baby proof my whole house to the absolute maximum.

I sometimes wonder if Lucas would be this big strong willed almost independent baby if he didn’t have the cleft, or whether someone above made him this way because of what he will have to endure throughout his life. I will be honest in saying that I miss some of Lucas ’s traits, like the way he used to poke his tongue through his cleft, but he now has so many more to replace them, and I was amazed the day he was actually able to blow bubbles out of his mouth, which was something he could obviously never do before the operation.

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We are currently waiting for a date for his next surgery which will repair the soft palate. Providing this is successful we are told that hopefully his next operation will be when he is about 8 years old, and that will involve a bone graft from his hip to his gum to bridge the gap in his gum line. With my hand on my heart I can truly say that I do not know how my family and I would have coped without our Cleft Team, they have been so supportive throughout everything, and they are an amazing team of specialists that have ultimately changed Lucas’s life, and for that I will always be eternally grateful. Cleft Lip and Palate affects around 1 in every 700 births in the UK, and yet it is something that is not very well publicised, and in every antenatal book I have looked in there is not even so much as a sentence about it. My aim is to help raise awareness, and educate others on what I call, the babies that break the mould.

Sarah

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