Thursday, 16 May 2013

Cleft Lip and Palate Awareness Week

This week is Cleft Lip and Palate Awareness Week
Cleft means 'split' or 'separation'. During early pregnancy separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary. The condition affects approximately 1 in every seven hundred babies born in the UK and is the most common congenital craniofacial anomaly. Taken from

When i was pregnant with Seb, i joined an online group for November 2010 mummies and in that group one of the ladies Carla had a beautiful baby girl Louisa who was born with a cleft palate. Following their journey over the last 2.5 years has helped me understand more about Cleft Palate and realise that there needs to be more awareness.
Carla has kindly written about her and Louisa's journey for me to feature on here today.

I was born with a cleft palate in 1978.
When I found out I was pregnant I asked my mum a few times whether our baby would be born with one and her answer was "well u was the first in the family" so who knows.
I never really thought about it much to be honest and never once mentioned it when having my scans and nothing was ever picked up.
We found out we were expecting a baby girl due around the 23rd of Nov 2010. (Well that was from one of the scans) my dates gave me the 7th November.  We had a 4d scan done and I remember saying to Jamie my fiance that she had right chubby cheeks.
Well my waters broke at midnight on the 10th November and Louisa was born on the 11.11.2010 at 11.33am, weighing 5lb 14oz. We were very happy with our bundle of joy.
I tried to breast feed her but she wouldn't latch on, the midwife who delivered her had a feel in her mouth and said she had a small cleft palate.  Didn't worry us to be honest. They rang for a paediatrician to come and check which she did and we was told no she was fine keep trying to feed her. So we listened to the higher person and again attempted to breast feed. Again she wouldn't latch on so another midwife checked and again told us she had a cleft. So we got another paediatrician and she agreed!!!! Was very annoyed to be told yes then no then yes. So they contacted the local cleft team and asked them to come and see us which was going to be the next day. So Louisa had a ng tube fitted so we can feed her. She then spent her first night away from us in the hospital nursery.

The next day the lovely lady from the cleft team came to see us and gave us lots of leaflets. She also said that Louisa had something called Pierre Robin Sequence which means her bottom jaw was far back so the tongue would fall back into the hole and she could stop breathing.
We were told she would need to go to special care for a few days until we got to grips with her feeding and we were also told that she could only sleep on her side. Those few days in special care were so so hard. Leaving her in hospital when we went home was so so hard. We got prepared at home and brought a baby monitor with the sensor pad which was a god send. We were taught how to tube feed her and had to be shown what to do if she ever stopped breathing before we could take her home.
After a week we could go home under the care of the community nurses, who I must say were fantastic.  There were many a time that we would need them in the middle of the night where the little toad had pulled the tube out. We saw the cleft team every few weeks and tried her on the bottle but she was a lazy bum. 
She had an ng tube in for 10 months which was horrible as her poor little cheeks couldn't take the constant putting on and pulling off of the tape. In the end it got so bad that her cheek got infected so we pushed for her to get a tube fitted into her stomach. It was eventually decided that this would be fitted when she would have her palate repaired. This was to be done at great Ormond Street Hospital. She was due to have the operation done Sept 2011. But whilst she was on the operating table the surgeon rang us to say he couldn't do it as her mouth was too small.
So she had the tube fitted and grommets put in her ears.
The operation was then rescheduled for January 2012 and the date was Friday the 13th.
Unlucky for some but not us. Watching her be put to sleep was the hardest thing ever and it certainly doesn't get any easier.  Since the operations she amazed us she started drinking from a bottle and started eating foods.

She is now 2 years and 6 months and has no tubes.
She is a typical toddler.
We have been told if we have another child there is a chance of them having a cleft palate and or lip.

For more inforamtion or to donate visit the  Cleft Lip and Palate Association here

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