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This is our story, written from Rachael's perspective, and the reason why we are raising money for this fantastic charity. For us, it is all about numbers.

I’m raising money for the Cleft Lip And Palate Association because their support has been invaluable to my family even in the 7 short weeks that we have been in their care. My husband and I were expecting our first baby on the 13/11/2013 and 2 days later our beautiful baby boy, Elliott, arrived!

It took 9 medical professionals 3 days to discover that Elliott had a cleft of his soft and hard palate. Of these 9, 6 were Midwives and 3 were Paediatricians.

After 282 impatient pregnant days, an 8 hour labour and a 12 hour wait in hospital we were finally able to bring our little boy home. As new parents we spent the night marvelling at our bundle of joy and occasionally looking at each other exclaiming “Now what?!” In our first 24 hours at home we had 9 visitors, 2 of these were midwives.

I was determined to breastfeed and wanted to make sure that I was doing it right. As soon as Elliott was born I was advised to try and feed him. He latched on and I felt wonderful at the thought that I was doing my job as a mum, providing for him in a way that only I could. Both of the midwives in the delivery room observed Elliott’s first feed and pointed out a clicking noise that he was making with his tongue. However, I was reassured that it was ‘quite common’ for it to happen and that he was just adapting to me.

18 hours after we came home from hospital we had our first home visit by the community midwives. They also observed me feeding Elliott and they too mentioned the clicking noises and suggested 3 feeding positions and even advised me to get special shields to aid the feeding as something ‘wasn’t quite right’. Other comments made included ‘he just isn’t getting it’ ‘he is still adjusting to you’ ‘he is doing something funny with his tongue’. I was left to carry on trying to feed him in the hope that he would adapt soon.

The night from hell. Our second night at home was truly awful. Elliott didn’t sleep at all and cried for 12 hours solid. Both my husband and I were completely out of our depth and had no idea if this was normal behaviour for a newborn baby? I am ashamed to say that during that night I questioned whether I was strong enough to cope. Again, the community midwife came for a home visit. Whilst observing Elliott she noticed that his respiratory rate was high even though he was asleep. Fearing that something was wrong with his feeding, she weighed Elliott and discovered that he had lost 12% of his birth weight in 54 hours. The midwife called for authorisation for us to be admitted to hospital. We gathered some things and headed for children’s ward 8.

I spent the 20 minute journey crying, blaming myself for not being able to feed my baby properly. I was a bad mother. I had got it all wrong and had failed after only 3 days. I wasn’t meant to be a mum; it obviously didn’t come natural to me. Once at the hospital, Elliott had multiple tests, his blood sugar was low and he had an infection. On his 3rd physical examination I asked if the registrar could check his tongue as I had heard a problem being mentioned by more than one person. After a short debate and my insisting that it was looked at, we finally discovered that Elliott had a cleft palate.

My ignorance of this condition took me by surprise. I was not even aware that it was possible to have only a cleft of the palate and not the lip. Having a cleft palate meant that Elliott was not able to create a vacuum in order to suck properly whilst feeding. This meant that no matter how hard he tried, he wasn’t able to get any milk. Everything seemed to fall in to place, this was the reason that he wasn’t able to latch on properly, the reason why he was making funny noises with his tongue and the reason he had cried all night because his stomach was empty.

Elliott was severely dehydrated and very poorly. What followed was a 5 day stay in the hospital. The doctors thought that Elliott had Meningitis so they performed a Lumbar Puncture. He had to have his temperature, heart rate, respiratory rate and oxygen intake documented every 4 hours as well as having blood taken every day to check his infection markers and blood sugar. A Cannula was inserted in order to be administered 2 antibiotics twice a day and to rehydrate him. Unfortunately Elliott was so dehydrated that it took 4 nurses 30 minutes to get the 1st cannula in. The poor little man screamed all the way through whilst my husband and I stood helpless, hearts breaking. He went on to have 4 more inserted as they kept coming out. They ended up bandaging up his arm in the hope of keeping it in, which Elliott liked using as a pillow!

Finally things started to take a turn for the better. The results from the lumbar puncture came back as negative, the infection markers came down and we got to meet a nurse from Alder Hey hospital who specialised in children with clefts. We were shown how to feed Elliott with a special squeezy bottle and informed of the next steps and what to expect.

We were able to ask plenty of questions and our nurse stayed with us for 2 hours to make sure we were comfortable with everything. Since then we have been visited by our cleft nurse almost every week to see how we are getting on, we have been given lots of booklets and information about an operation that is needed to repair the palate and been put in contact with other families in our area who also have children with clefts. We have joined a Facebook group, currently with 84 members, where parents can share stories, tips and advice.

We were also invited to a Christmas party with 13 families where Elliott met Father Christmas and was given a present. This event was funded by CLAPA and organised by a parent contact that had been trained by CLAPA. The opportunity to talk to other parents who had been through the same thing we had was invaluable. I was able to ask questions about the operation, speech therapy and feeding techniques.

We have had a rocky start but we now have the information we need and have fantastic support provided by CLAPA. Our cleft nurse is fantastic and is always available if we need her. I really don’t know how we would have coped without the facilities available. Although most people have heard of a cleft lip/palate there is a lot that goes with the condition that people don’t know. I feel that this is also true for general practitioners, midwives and even paediatricians. This is why it is so important to support charities like CLAPA who are specialists and have the answers to reassure you when you are faced with life’s little surprises. Luckily, 7 weeks later we have a healthy, hungry and very happy little boy!

You might be wondering where the numbers part comes in? Well 1 in 700 babies are born with a cleft. 1000 of those babies born will be in the UK. My target is to raise £1 for every child born with a cleft in the UK in 2014. Your donations could help families in so many ways. For example…

£10 could provide a family with a baby starter kit. This includes the squeezy bottles and the specially designed teats needed for feeding a baby with a cleft.

£20 could provide a family with a complete set of literature about what to expect and contributing factors to raising a child with a cleft.

£100 could provide a day’s training for a Parent Contact.

I will be getting involved in multiple activities this year in order to raise my target of £1000 which will help lots of families just like us but I would really appreciate your help to get me there!

 

Thank you!

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