Hi my name is Sarah and I have read all the stories that have been recently posted, and I have to say they have touched my heart, and inspired me to write Lucas’s story.
My family and I live just outside London on the UK, and I felt inspired by all your posts to write our story and give you an insight into how the Cleft team work here.
In June 2009 I found out I was pregnant with our second baby, to say we were over the moon was an understatement. Everything was progressing well and I call recall the day like yesterday when we went for our routine 20 week scan. I felt particularly uneasy that morning, I cant describe why but for some reason I knew things were not how they should be, it was a deep gut yearning in the pit of my stomach, maybe its 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 we 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 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, and frighten ourselves by looking it up on the internet. A member of our local cleft team had arranged for me to have a further more in depth scan at Kings College Hospital London, to try and establish if this was an isolated incident.
When the first scan at Kings College arrived we were feeling very 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 actually it was something that was repairable. 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, as 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 offered me to have an Amniocentesis, which we rejected as we had already made the decision that as a family we would deal with whatever was thrown our way, and we had decided that no matter what happened were still intended to keep the baby. When I look back at this point now I know it was the best decision we ever made.
We now knew that I was carrying my second boy, a little brother for my at the time 5 year old son. We couldn’t have been happier I think in a way this kind of brought back some of the shine to the pregnancy, as we were facing so much uncertainty with regards to the health of our unborn baby.
My pregnancy progressed and I was closely monitored by my local hospital and also Kings College, I went through at least 8 more scans, and every single one of them still can 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.
The cleft nurse came out to me at home and showed my how to feed our baby when he was born, as my eldest son was 6 weeks premature so the medical team were under the impression that history may well repeat itself, so everything was organised in case this were to happen.
In actual fact my gorgeous baby boy Lucas was born on 30th January 2010 at 11.25pm weighing 8lb8oz and only 2 days early. Even now my baby likes to prove everyone wrong! He was born with a unilateral cleft lip and palate, and after many scans of his heart, kidneys, brain and about 6 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, even though I knew how to feed him, I was simply too tired to object, and the cleft nurse arrived the next day to do all the necessary checks with a hope to remove his tube, 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.
Once the tube was removed I was able to start expressing for him, and I managed this for 5 weeks. The cleft nurse came to see us many times at home at she was amazed by how much weight he was putting on, who said that cleft babies don’t feed well? Ha ha.
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, although I knew he certainly wouldn’t thank me for it in years to come, so the surgery went ahead without a hitch. Nothing could have every 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.
The cleft team came to visit us many times at home to check on Lucas, and everything is going really well. His stitches dissolved so quickly and I remember looking at him one day about 4 weeks after his surgery and realised 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.
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.
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.
We are currently waiting for a date for his next surgery which will repair the soft palate, which we anticipate will be scheduled for about October. 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.
In the UK we are in the fortunate position that all Lucas’s medical care is provided free of charge by our National Health System. He has a Surgeon, Speech Therapists, Orthodontists, and Nurses just to name a few of the specialist team that will oversee his health until he is 20 years old.
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 antennal 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.
(Loving Mother of Lucas Charlie Dennis)