Luke’s World

May 12, 2016

Luke was born win 1996 with a cleft lip and palate. Here, proud mum Jackie tells her family’s story…

I found out I was pregnant with Luke in 1995. Luke’s cleft lip & palate were not spotted on scans. Pregnancy was perfect (except coffee was a strict no-no as it brought on sickness). I had never felt so well.

Labour began slowly on the Monday. Being a first time mum I didn’t know I was in slow labour so didn’t contact the hospital until Tuesday evening….when the pains became stronger! I was admitted that night and underwent every examination known to man, but the midwives were amazing and time flew by.

Our little treasure arrived on Thursday 7th March 1996 weighing a healthy 7lb 13oz! Dad helped to deliver and was there to see that Luke was that extra bit special.

 

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One week before surgery

I remember him being placed on my tummy and saying “aaww look…he has a cleft lip”. His Dad just said “I know kiddo…but we’ll be alright”.

And we were.

So much happened in those next few hours…phew!

Doctor, nurses, specialist nurses…we felt like royalty!

It turned out Luke also had a cleft of the soft palate.

Luke was taken to special care at 11.30pm that night due to not feeding as he should. They were just amazing! They fitted him with a feeding tube and then sent me back to my room to catch up on some much needed rest.

The next day I went to the special care unit, and the racket from outside the doors was unbelievable. I just knew it was my baby’s cry (and I hadn’t even heard him cry before that). A jolly nurse practically dragged me in and said “That’s yours…hurry up and sort him out” and we had a good chuckle.

We had lots of visitors from the Cleft Team giving us information and a plan for the future and we finally took our boy home the following Tuesday.

His first operation was in July 1996. His lip.

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48 hours after surgery, with his little bead on his nose and the one up his nose to keep it straight

I won’t say it was easy. It was most likely the hardest thing we have all had to endure. But the support we had from Booth Hall Children’s Hospital Ward 10 and the Cleft Team, got us all through.

I remember having him placed in my arms when he came back from theatre. I cried because I didn’t like his ‘new lip’. How crazy is that? But we had gotten used to him with his little ‘Elvis lip’ and his cry was completely different to what it was before.

We were there for 10 days in isolation, but with the best support we could have hoped for. One of the nurses on Ward 10 gave us a great tip: aqueous cream. When the scars have healed, rub it in at every opportunity to reduce scarring. Boy did that work! His scar is hardly noticeable.

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First year in primary school
JackieWestburyLuke04
Luke age 20

Over the years Luke has had 1 lip repair, 1 palate repair, 2 or 3 lots of grommets, 1 bone graft from his hip to his jaw, and has taken everything in his stride! His teeth were fitted with a brace and are now perfectly straight (jealous.com) and he is awaiting his final 20 year Professionals appointment where he will more than likely be discharged…sob sob!

I cannot thank the Manchester Cleft team and CLAPA enough for all the support and information they have provided us with over the years.

Each and every one of you are amazing!

As you can see…our Little “Elvis” has turned into a very handsome young man!

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