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Charlotte was born in April 2008, she was delivered in a planned home delivery, she weighed in at a whooping 9lb and ½ an oz (which accounted for why I'd been so huge!). I have to confess that the moment I saw Charlotte I thought that something was wrong, she was crying and could not be consoled and her face looked "wrong", sort of out of proportion. However, I was assured that all was well and to be honest within about 2 hours her face had changed and she looked more "normal". I was planning to breast-feed but Charlotte wasn't interested, we weren't unduly worried about this. Our older daughter, Matilda, had been exactly the same because of excess mucus in her nasal passages and Charlotte sounded the same as she had.

The day after Charlotte was born a specially trained midwife came to do her post-birth paediatric check. Charlotte still hadn't fed at all and had had a couple of really nasty choking incidents in the night so we spent a while chatting about that. As the midwife was about to perform her final check of running her finger inside Charlotte's mouth I said "you know I had a cleft palate when I was born". I'm not sure why I said it but I guess at some level I knew something wasn't right and I just suddenly thought that it might be something that wasn't easy to see. Almost as soon as the words were out of my mouth the midwife looked up and said, "Yes, I think Charlotte has one too". The midwife phoned the maternity hospital and arranged for us to be seen by a paediatrician to confirm the diagnosis.

Sure enough the paediatrician confirmed that Charlotte had a very big cleft of her hard and soft palate, to be honest under the glare of the hospital lights it was impossible to miss. The hospital staff contacted the regional cleft team who said that they'd visit the following day but gave the midwifery team some feeding advice over the phone. Overnight Charlotte still couldn't feed and seemed to settle best when she was laid on her side rather than being held.

The next day on-call specialist cleft nurse arrived and told us that not only did Charlotte have a cleft palate she had something called Pierre Robin Sequence. To be honest we didn't really know what it meant at this stage, I'm sure she told us something about her jaw growth and tongue positioning but neither of us really took it in. The nurse did a feeding assessment using a specialist bottle which she could squeeze whilst Charlotte sucked but Charlotte choked and couldn't co-ordinate the feed at all. At this stage the decision was made to admit Charlotte onto the special care baby unit as she was not feeding and the nursing staff on the SCBU had more expertise in feeding babies with problems.

Within 3 hours of being admitted to SCBU Charlotte had been weighed and they had established that in her first 48 hours she'd lost over 1lb, she was also starting to look quite jaundiced. The doctors recommended that a NG (naso-gastric) tube be put in so as Charlotte could be given milk that way. I have to say that it is probably one of my worst experiences to date when I had to hold her down whilst the nurse put in that first tube, Charlotte screamed and struggled so hard but the tube was put in and at last she was able to be fed. I was allowed to express milk so some of the first feeds that she had were still my milk. After that we moved to formula because I didn't think it was manageable to express milk for Charlotte when to do this successfully I would have had to express 6 - 8 times a day and feed Charlotte by tube which at this stage was taking up to an hour each feed.

Charlotte's named cleft nurse came to see us 2 days later and she explained a bit more about the Pierre Robin diagnosis. She explained that Charlotte's jaw would naturally grow forwards and that the big issue for now was positioning Charlotte so as her tongue didn't fall into her cleft palate, in effect blocking her airway and cause her to choke. The cleft nurse warned us that often babies with Charlotte's diagnoses fail to thrive, are extremely tired and need much more rest than other babies, cannot cope with being held lots and can sometimes be developmentally delayed in the short-term. Once again Charlotte's ability to feed from the squeezy bottle was assessed and once again because of her lower jaw and tongue positioning she had nowhere near the level of co-ordination to do it.

The cleft nurse told us that positioning was vital for Charlotte and that she would need to use a special car seat that would allow her to lay down flat on her side rather than be in the cradled position of most car seats. The cleft nurse said that the car seat that she recommended cost £200 but that she could make a charity application to get one for us. The cleft nurse also explained that Charlotte was going to need to be tube fed for some time and that she could come home with the tube if I learnt to feed her and change the tube.

So like a woman with a mission I learned how to feed Charlotte through the tube, I successfully changed the feeding tube and 2 days later we were allowed to go home. We were sent home with a clear feeding regime which dictated how much milk Charlotte should have and when. We also received outreach-nursing support from the SCBU, this involved a nurse visiting us at home to advise and support us. The nurse was also on hand for the tube changing so for the first few weeks she was there to talk us through it and watch us do it when we felt able to.

Within a couple of days of being home we felt that Charlotte was hungry in between feeds but with such a strict regime from the hospital we didn't know what to do. The outreach nurse advised us that if Charlotte was hungry we should feed her and basically guided us towards a more "normal" feeding routine. This worked well for Charlotte; she thrived and also slept very well which essential for her. We did need to wake her for feeds sometimes as otherwise she would have slept for too long and would have completely missed feeds. We worked on a basic principle of regular day time feeds and gradually reduced her night time feeds to enable her to get a good long sleep at night.

Charlotte did need a lot of sleep in those early months and when she wasn't sleeping she could not cope with being over stimulated and she seemed to find new environments very tiring. Because of the Pierre Robin Sequence Charlotte's breathing was more laboured and this respiratory functioning affected her general energy levels. This had an impact on what we could do with Charlotte as too much exertion often led to her becoming overtired and then she would become distressed during her feeds. As a family we did not have a day out together until Charlotte was 4 months old and her energy levels had improved.

One of the hard things with Charlotte when she was small was that she really didn't settle well being held. This was due to the Pierre Robin Sequence, the position of Charlotte's tongue in her mouth and how it could block her airway. If she got upset she often settled better laid by herself with one of us close to her but she rarely seemed comforted by being held. It seemed that Charlotte couldn't get her breathing rhythm right if she was tired or upset unless she was laid on her side. It was hard as parents to accept that the best thing for Charlotte was to sometimes leave her laying alone rather than cuddling her.

Not being able to nurse Charlotte either on the breast or the bottle has been really hard. I have never held Charlotte and fed her and she has never had that close comforting experience. I think that I will always be sad about this and do feel that it's something that we have all missed out on. Charlotte is beginning to enjoy cuddles but even now even she's distressed or poorly she often cannot settle in my arms and this is upsetting because it reminds me of what we've all missed along the way.

At 2 months old Charlotte had her eyes tested, which apparently is now routine for all babies with an isolated cleft palate to check for eyesight and retinal problems that may be related to something called Sticklers Syndrome. I went along to the eye test not expecting there to be any problems as Charlotte seemed to be alert and interested in her surroundings. We were amazed and very upset to discover that Charlotte is severely short sighted and she was prescribed glasses immediately.

The eye doctors could not see any problems with Charlotte's retinas but said that this did not mean that she didn't have Sticklers Syndrome and that the genetics team would need to progress this investigation further. We have seen the genetics team and investigations are on going and as yet no firm diagnosis of Stickers Syndrome has been made.

The specialist cleft nurse visited regularly to try and progress Charlotte's feeding onto the squeezy bottle but Charlotte just could not do it and by the time she was 3 months old she wouldn't even try anymore. We started to wean Charlotte at 4 months and she took to the solids almost straight away, she seemed to be able to manipulate the solids round her mouth in a way that she couldn't manage with the milk. We did have episodes of food coming down her nose but to be honest it wasn't half as bad as we thought it would be, as Charlotte seemed to be able to control it all pretty well.

By the time Charlotte was 6 months old we had increased her solids and we took her tube out. The cleft nurse had hoped that once the tube was gone Charlotte would drink milk from a beaker but Charlotte had other ideas! It was very clear that she could and would eat lots of food but would not drink milk (or much of any other fluid really). So at 6 months instead of having 3 solid meals alongside 3 or 4 big milk feeds like other babies Charlotte had 6 solid meals a day. Charlotte has managed well without the tube, she has continued to eat lots and has continued to thrive and despite having the tube taken away did not lose any weight.

When Charlotte was 8 months old she had a hearing test and it was found that she has moderate hearing loss. At the minute the doctors think it's due to glue ear but can't totally rule out a more permanent hearing loss in the future (possibly linked to Sticklers Syndrome). Because of the level of hearing loss it was recommended that we consider hearing aids until grommets can be considered when she's older. Charlotte now has hearing aids and within 48 hours of her having them we noticed a greater range to her babbling and the latest hearing test showed that with them in her hearing is within normal limits.

In terms of how the Pierre Robin has continued to affect Charlotte; well at the time of writing Charlotte is 11 months old and her jaw has grown forwards a lot. Charlotte's cleft palate surgery has been delayed until after she is 1 year old, as the doctors wanted to allow her lower jaw to grow because airway maintenance both during and after the operation can be difficult if the jaw is still set too far back. Charlotte still tends to prefer to lay on her side but can now also cope really well if asleep on her back. On balance Charlotte still needs a lot of sleep but when she's awake she is never still and shows no sign that her complex health needs are holding her back. Charlotte has just begun to stick her tongue out and unlike most parents we've celebrated this achievement and are encouraging her to do it more!

The last 11 months have been a rollercoaster we have learnt a lot about our daughter's various health conditions. We have celebrated good times and have had some real lows. In the next few months we know Charlotte will have her cleft surgery and are looking forward to seeing her through this recovery and moving forwards with whatever challenges lay ahead.

Ailsa & Niki (Charlotte's parents)