As the weeks rolled on…….

As the weeks rolled on we started to relax about what was to come and was getting excited for our baby to arrive, we were offered meetings with the family so they could understand what was going to happen and explain what our baby would look like, but we decided to take the lead and explained to everyone. My emotions were all over the place yes pregnant and hormonal but grieving for the baby with the cute rose lips and button nose that I knew my baby wouldn’t have. I always hated when people said to me why are you worrying and it can be fixed, yes they are right but all my other friends/family had babies with normal facial features and more importantly didn’t have to have surgery at 3 months!!! I know there are worse surgeries/illnesses but this shattered my world my first baby and I didn’t know where to turn.

Until…..

I started speaking to CLAPA they were always there, we were offered so much help and from a charity that is only run by a few people in London of which has spurred me on this year to run The Royal Parks Half Marathon for them. I have to give back what they had given me support, advise and an ear to bend when I was feeling low.

I had bought all the bottles I needed from CLAPA they were squeezy bottles with a teat to fill the cleft, they supplied the first few for free then you paid for the rest and man alive I made sure I was well stocked, only issues was the never fit in the steamer so back to the olden times and boiled in a saucepan hahah.

I was in communication with Cambridge Cleft team every week and Anne Moss a consultant from Hinchingbrooke of whom wanted to be involved and kept informed as and when was to go into labour, she was a wonderful lady who when she spoke had a calming/reassuring nature – sure that is her job but it was much more than that. When I was first told the news at Hinchingbrooke they asked my why I would be so upset, I remember snapping and saying my baby has to have surgery at only 3 months how would you like it. Appearances have never mattered to me and I already began to feel so much love and protection for my baby.

At each scan we got to see our cleft baby we never decided to find out the sex we wanted to keep this a surprise although I was convinced I knew what I was having ‘a boy’ or was it? I remember laying on the bed yet again and consultants surrounding me to gain the extent of the cleft and then all of a sudden you saw a tongue pop out (bear in mind this was 4d) I had never giggled so much and then all you saw was a hand a speak to the hand moment I think my baby had enough of being looked at, poked and pushed around we just wanted to be normal and left alone…….

 

What Happened Next

So upon leaving the hospital for what seemed like hours talking about care plans, surgery, treatment, scans and much much more. I felt so drained and tired, tired of listening to professionals telling me what the next step would be, how my baby will look and asking if I was OK. I wasn’t OK as I mentioned every woman dreams of having the perfect baby, me I felt like I was mourning the perfect baby and learning to deal with my baby looking different, people staring and commenting and they did but I will say more on this later in the blogs. The drive home was long and slow as I made the telephone calls to our family and friends, we explained what was going on and how she may look with everyone on strict instructions to NOT Google ‘Cleft Lip and Palate’.

Jason was off on a stag weekend he didn’t want to go and his brother and friends said they would understand but I told him to go as there wasn’t much he could do we would only be making each other miserable and upset. All I could see as I held on tight to my tummy the little 5-year-old girl after her cleft had been fixed she had the most beautiful eyes and looked so happy, I wondered what my baby would look like and questions were flying around and around my head. Why me, what did I do – I know I done nothing everything was by the book when I fell pregnant but I still didn’t understand. People would say to me its OK it can be fixed, you will be fine and don’t worry! That one always ‘pissed’ me off, no one knew how I felt and no one understood my tears.

As the weeks rolled on we were being scanned one a month and very lucky to have 4d scans, yes it was only to see the extent of the cleft but still we got to see our baby up close and personal.

What is a cleft I hear you ask?

A cleft is a congenital birth defect. There may be a cleft (split) just of the lip, just of the palate, or both. They can be one-sided (unilateral) or double-sided (bilateral).

How does this happen?

In the womb, the upper lip develops from three parts and the palate develops in two halves, which then join in the middle. Clefts happen when they fail to join normally.

The process of joining of the gum and lip begins behind the gum at about 6 weeks after conception. If it does not happen, there is a complete cleft of the lip and gum. Sometimes, if the process of joining begins and is not completed, the gum may not be affected.

The two halves of the palate join at about 8 weeks and this process, too, may be partial or complete so that clefts may just involve the soft palate or the hard and soft palate.

How frequently does it happen?

We know that in the UK one in 700 babies are born with a cleft. The figure is higher in Asia and particularly so in people from the Far East. It is estimated that 250,000 babies throughout the world are born each year with a cleft.

Keep following for more upates on our journey.

 

 

I’m trying

So working out in the gym is hard, it’s hard trying to push yourself each time to get that little bit further. As I run on the treadmill I feel my shin splints start and feet begin to hurt but I can’t give up no way I set this challenge and I will continue to train and fight hard. It’s emotional I am over come with secret tears and try to hold them back as I push myself only got up 5k today but it’s a start and the start of my journey. 

This is just the beginning!

I found out in March 2006 that I was pregnant with my baby girl Lisa-Marie, she was a very happy surprise after moving into my house. I remember finding out and dropping my phone down the toilet at the doctors, I remember the nurse telling me and I broke down in ‘happy’ tears not believing the news. My pregnancy in the beginning was straightforward and I had no issues apart from morning sickness, my 12 weeks scan came and went. Lisa-Marie was growing well and looking healthy, it wasn’t until I had my bloods tested in which resulted me having another scan at 17 weeks due to an abnormality with my blood tests. This was the scan where we found out that something could be wrong with our baby girl, as I laid there the sonographer remained quiet but continued to check measurements, heart beat and growth. She then said to my husband and I that she needed to bring in a consultant as she couldn’t get a clear picture of Lisa-Marie’s face and the part she did see there was something not quite right, Lisa wouldn’t show her face it was like she knew! Anyway the consultant took over and proceeded to take a look, he managed to get a glimpse and told us that he suspected that our baby had a facial cleft and booked us back in for 4d scan to get a clearer picture of Lisa-Marie’s face. Laying on the bed not really knowing much about cleft lip and palate I was a little unsure of what we were going to find, then all of a sudden it was confirmed my baby had a cleft lip she wasn’t going to have those cute rose bud lips and button nose that everyone dreams of when they are expecting a baby. I was consumed by tears rolling down my cheeks for the fear of the unknown and knowing my baby needed surgery. We were referred to The Rosie at Cambridge and this is where the journey really began, sitting in the waiting room waiting to find out the extent of our baby’s cleft my tummy was in knots (not to mention the amount of water I had taken on board before the scan haha) We were called into a room where we met with Sue Burgess a consultant and representative of CLAPA. Also in this room we were also joined by another 5 consultants waiting to take a look using the 4d scanner to find out the extent of our baby’s cleft.

Now technology these days is somewhat so technical they were able to see through the back of Lisa-Marie’s head to see how far her cleft was. It turned out that her right side top lip, gum, hard palate and soft palate had been affected. Again not knowing what to expect Sue took us into a small room where she began to explain about clefts. I was still unaware of what my little girl would look like and this is where she showed us some images of other children, I remember the first was the most beautiful little baby boy he just had a cleft in his lip and I thought well that’s not too bad I can cope with that. Then she showed me a picture of a little girl 5 years old blonde hair and blue eyes you wouldn’t even know that anything was wrong until Sue showed us the baby picture an d this hit me hard as all I could see was the cleft on the left side of her face and through to the gum. I felt sad for my baby and also guilty that I was crying over my baby not having the perfect little lips. Sue continued to explain and told us that Lisa-Marie’s cleft was one of the widest they had seen and that a care plan would be drawn up to correct her cleft.

There is much more to tell and I will post again soon, watch this space as our story continues and my brave little girl fights on through surgery after surgery.

https://www.justgiving.com/Julie-Payne11

 

Welcome to my journey

Hello and welcome, this is my first time writing a blog I have never had reason to write until now, you see I have entered myself into the London Royal Parks Marathon 8th October 2017 in order to raise much needed funds for CLAPA Cleft Lip and Palate Association.

This is very close to me as my daughter Lisa-Marie as born with a unilateral right side cleft lip and palate, I found out when I was 17 weeks pregnant.

Please follow my journey and support me in my quest to take on this challenge.

https://www.justgiving.com/Julie-Payne11