My Son Has A Cleft Palate

To mark the end of Cleft Palate Awareness week I am delighted to share this list which, yet again, reminded my how naive I am; though I understood the physical impact of Cleft I had never stopped to consider the greater implications.

Thank you Becky for sharing this with us:

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• I’m Becky, I work full time in marketing and am a mum to 2.5 year old Felix who was born in November 2015 and diagnosed at birth with a cleft of the soft palate. We’ve been under Great Ormond Street Hospital for his care since he was born.

• You tend to find that people only really understand and recognise a cleft lip, but there are various types of cleft, all with different implications for the short and long term… you can find more information here…. https://www.clapa.com/what-is-cleft-lip-palate/

• Felix has a thing called Pierre Robin Sequence, where the main feature is a small lower jaw, but also includes a cleft palate. It’s mainly diagnosed at birth.

• The most difficult thing to come to terms with is that there is no straightforward ‘cleft+ 1 operation = fixed ’ approach. It is a winding path of treatment that takes time to get used to. I am a very black and white person, who likes results and clarity- so this hasn’t been something I’ve found easy.

• Most babies have surgery to close the cleft at around 10 months old. So far Felix has had 2 operations and we found out recently that he will need more….

• When Felix was born and diagnosed, I can remember almost immediately post birth, the paediatrician looking at his chin and commenting on its small size and how this was a marker they needed to check, but also quickly referencing my own small chin (thanks!). Since then I’ve become midley obsessed with weak chins.

• It’s weird when I think about scan photos, I always in hindsight remember thinking his chin was tiny- but I guess lots of babies have a little chin.

• They very quickly saw there was a cleft, and told us they would be in contact with the local Cleft team to come and see us before we left hospital. Felix at not even a day old, then had to undergo loads of other tests to check for other related issues.

• Our lovely cleft nurse specialist arrived to the post-labour ward the next morning with a selection of bottles for us to use (babies with a cleft palate have very poor suction and so need the help of squeezy bottles to feed)

• Obviously, keen to get home, I had to fight my way out of the hospital because they wanted us to stay until he had established a feeding routine- I told them under no uncertain terms that I needed to go as we had visitors coming, that I would call if I needed (standard crazy new mother and very standard me!)

• We were given an appointment at Great Ormond Street for when Felix was 4 days old. This was a total blur. I remember being told we were ‘very together’ and didn’t seem fazed….seeing an entire room of medical professionals, discussing treatment plans upto 18 years of age and having to go and get medical photography done…whilst uncomfortably waddling around the place. I wasn’t fazed because I had NO idea what was going on.

• I tried to live in denial for a good while….pretending everything was fine and that Felix was completely normal…. Trying to use normal bottles that weren’t helping him at all. That was stupid…..

• Breastfeeding is simply not an option because of the suction issue- I can imagine for some people that would be really hard to come to terms with… I had always been open minded about that anyway, so it didn’t bother me too much. I did a bit of pumping, but Felix didn’t really sleep even as a new born, so that didn’t last very long… it’s a great way of getting your partner involved immediately ☺  I do remember having mixed feelings about it- seeing all the other NCT mums breastfeeding away, and me messing about with leaky squeezy bottles. Luckily on the flip side, while they were busy worrying about the normal crap you worry about with a first new born, we had bigger fish to fry and that gave me some good perspective.

• About a week in, I did come across one absolute moron who decided to inform me (in a slightly less explicit way, but nevertheless obvious enough) that you can medically abort a baby until 40 weeks for a cleft palate. She was very lucky I didn’t ram her with the buggy, or much worse. Gobsmacking.

• Once diagnosed, I blamed myself- obviously. I googled every cause of Pierre Robin Sequence, tried to read every medical journal article published on the internet (understanding very little).  I scrutinised everything I did, and probably found about 20 root causes. But eventually you move on from this, onto another set of worries.

• At appointments, you need to ask all of the questions…..don’t leave anything unanswered- however stupid and however based on page 12 of your latest very specific google search.  These times with professionals are few and far between and you need to get the answers. I remember our Paediatrician saying to me at one point ‘You REALLY need to stop googling now’. I didn’t, but probably reigned it in slightly.

• Children’s hospitals are emotionally draining, yet incredible places.

• We used to leave feeling emotionally exhausted for days, but it’s much easier now. I try to remember that a cleft is a small issue in these amazing places of care. But when you’re going in for a sleep study, for a hearing test, for an examination or for an operation, it is hard. Now we use it as a good excuse for a nice lunch out as a family.

• Every now and again, I remember writing absolutely crazy emails to our cleft nurse… about my latest paranoia with Felix’s condition…Her responses were always measured and lovely. It’s important to remember that you don’t know what you’re doing and these professionals do- so it’s fine to seek advice (even if written at 2am in a slightly erratic way!)  

• Feeding and weaning are all SO messy. Get used to milk coming down the nose regularly and the same with weaning! Everything comes down the nose and the sneezes are RIDICULOUS….think pureed butternut squash everywhere!

• Wind is a major issue. Cleft babies seem to take in a lot more air. We spent hours and hours and hours extracting an awful tiny uncomfortable fart or burp from Felix, but one that was clearly causing him so much discomfort.

• Weight gain is another major issue. I remember the days of having to send weekly reports to the hospital on what Felix had consumed, because his weight gain was slow. They did 2 sleep studies on him as they thought he might be not gaining enough oxygen. Eventually, at around 4 months old, the Dr hit the nail on the head ‘this baby does not ever stop wriggling does he?’….

• The cleft repair operation is really tough, but it is manageable. No one wants to hold a mask on their 10 month old until they drop off to sleep, but it’s very gentle. Felix was away for about 4 hours- it felt about 20. I remember pacing up and down the corridor waiting for the buzzer to go off.

• Again, no one wants to watch their baby coming round from anaesthetic, full of lines and tubes and with a sore mouth that’s been stitched together. The first couple of days recovery is really tough and exhausting. There’s a lot of medication, a lot of observation, a lot of trying to encourage eating, in a noisy hospital, for a small baby.

• Taking turns and getting people to come and help or just entertain you is so important. Recovery is quite all consuming and any light relief is much appreciated. Felix is a thumb sucker and so we had to try and make sure he didn’t put his thumb in his mouth…every nap time, for 3 weeks.

• Felix’s wound opened up, about 4 days into recovery. That sinking feeling when I saw it was awful. We saw consultants straight away, they were hopeful, but unfortunately it didn’t heal correctly and needed repairing again.

• The second surgery & recovery didn’t seem to be as bad. You’re probably much better prepared for what’s ahead… the anaesthetic was  still really hard, and seeing him come out so confused and angry was horrible too… but these kids are SO resilient, they bounce back. Within 2 hours of coming out of theatre, Felix was smashing down chocolate cake mashed with yoghurt to make it really runny.

• Speech development can be impacted (although not always!) Unfortunately whilst the cleft seems to have been repaired, Felix’s palate is too short and causes issues with sound production. So more surgery is ahead. He has speech therapy weekly to help with sound production, and it makes SO much difference.

• We’re now into the 1% of the 1% (or so it feels)-  a place I couldn’t have ever imagined…. a velopharyngeal dysfunction clinic. (air escaping making sound production difficult). You think it won’t happen to you… and then you’re there…but you deal with it, because you have to.

• Felix is SO strong willed, focused and determined, with an amazing sense of humour and a passion for transport that is unrivalled. No doubt the tough times he’s already experienced will have contributed to these characteristics. He’s super confident, chats and sings none stop. He’s got some further hurdles to overcome, that he doesn’t even know about or understand…but he will and he will be a stronger little boy for it…..

• The CLAPA (Cleft Lip and Palate Association) charity is a great support. I’ve spoken to parents on there and supported other families facing surgery. Being able to contact parents who have been on the same journey is invaluable…