I was born with a birth defect. AMA

[Borntomakeit]

Cleft lip and palate. Now middle aged. Wondered what questions people had as children often have loads but are too shy to ask and also wondered if it may help new parents or expecting parents of babies with clefts.

How visible is your disability, have you had surgery to correct it and how well did that work? I feel like I don't see as many people with a cleft lip as I used to years ago and wonder whether that's due to different surgical techniques or some other reason. I hope this isn't a disrespectful question if so I apologise.

@HaroldTheStallion It is very visible and more visible depending on how I hold my face or whether I am side on. If I smile, it is much less visible. I spent a lot of time working out how to hold my face when resting.
It was 20 years ago since I last had surgery on my nose. It now needs correcting as I cannot breathe through my nose properly.
I assume this may be either because surgery is more effective, or early detection and abortion.

Thanks for answering my question @Borntomakeit. I hope you'll be able to have your surgery soon and that it helps your breathing.

My son used to be friends with a boy who had a cleft palate. Eating was an issue for him as he would take much longer to finish his food than other kids at parties.
Is eating difficult for you?
He had many issues with speech, orthodontics and other easily acquired infections. I always assumed as he had a vulnerable open type wound.

Do you feel it has held you back in any way, job wise, relationships etc?

I think surgery has improved massively. I know a 16 yo who was born with a cleft pallette and the surgeon did a great job.

@Bingpt My mouth is very small so it does make eating and drinking harder. I am very petite anyway, but I tend to have to use a tea spoon for dessert and if the cup is too wide, I'll have to ask for a take out cup in a cafe or a straw if a cold drink. Costa coffee is the worst.

I do speak nicely now after lots of speech therapy, more like if I've got a cold. I struggle to make myself understood if the person is not listening. I am quite quiet in public. I never ask for directions or help in shops.

Infection wise, yes I got a lot of ear infections and still do if I've had a heavy cold. Its because the nasal passages are very narrow and things back up.

@Dacadactyl Job wise, very much so. I have a high quality masters degree but struggled to find employment apart from low paid work. I got many, many interviews but lots of rejections. 'Not a good team fit' was the usual one. Once in a firm, I rose through the ranks very quickly. Almost as if I had to prove myself.
Relationship wise. Yes. I struggle with self esteem. I need lots of reassurance because I often feel unworthy. I was married for a long time and have DC without clefts. Sadly, now divorced. The nicer men I have met don't have a problem and relationship wise have been supportive. Those that do have a problem tend to completely ignore me or look at me with disgust.
Friendships are not good. I have one friend who I am very grateful for. I had no frienships at school.

Did you talk late, OP? Aeons ago, I used to be an au pair for an adorable four year old who'd been born with a cleft palate, and he tended to be aggressive with other children, in part because he was frustrated at not being understood, despite intensive speech therapy. (It improved over time, and he's now a ravishingly good-looking 30something!)

@SiegePerilous Surprisingly not. My parents were told that I would never really talk properly or hear properly. I couldn't hear very well due to constant ear infections but talk I did. I was a frustrated child and was aggressive due to anxiety about being stared at.

Bump

What would you say to someone who has found out they are expecting a child with a cleft palate?

Really interesting! Hope life is good to you.

I clicked on this hoping the defect would be a cleft. My 9 year old was born with a cleft lip and palate. I have met a few parents of children with clefts but very few adults.

How many operations have you had and how old were you when you had them?

Did you have a bone graft and do you have any tips for coping with that (my ds is going to have that operation soon)?

Do you have other health problems as well as your cleft?

Do you use support groups (either online or in person) for people with clefts?

Can you whistle?

How were you fed as a baby? Did the squeezy bottles that my son had exist then?

@Dacadactyl Think very carefully is my most diplomatic answer. My mother has often said she would have chosen to abort me. She refused to see me for three weeks after my birth. My mothers attitude towards me has caused moee psychological damage than anything else.

Goodness me, that's terrible of her to have said that to you.

@elliejjtiny
I was fed initially by tube. My mother said it made her feel ill so once home, she fed me with a teaspoon or waited for my dad to do it. Post repair, a bottle.

I can whistle really well! Tell your LO not to give up!

I don't use support groups. I try not to let it rule me. I've had counselling and therapy from the cleft team which helped for coping with staring and dealing with questions or comments.

I have no other physical health problems but had continuous ear infections well into adulthood. I also had grommets. I have adhd and attachment disorder.

Operations. Palate repair, cleft repair, bone graft x3 (one failed), grommets x 2, jaw surgery at 15 and rhinoplasty at 17. Due another in a few months. Be prepared for endless orthodontics and some very painful camera up nose action.

My advice. Leave it well alone. No fiddling or touching with fingers or tongue. At nine you cannot comprehend how important it is. Oh, and his breath will stink for a few weeks.

@Dacadactyl She hasn't coped well, let's put it that way. I can see her point. It takes real strength to deal with having a child with facial differences ans psychological scarring.

My heart hurt for you reading that about your mum. Can I offer a cyber hug 🫂 to you dear sweet soul

Wow, your mother sounds horrible to say that to you. That’s unconscionable. I hadn’t realised cleft palate could be so severe. I thought it was just a lip that didn’t join up properly.

My Mum was born with cleft lip / palate too and she had surgery at great Ormond st. Many moons ago as she is in her 60s now but the surgeon's did an amazing job and you would not notice that she had it. Her scar looks like a little lightening strike and I always thought it looked pretty cool.

She also had speech therapy, missed a lot of school and had orthodontics problems too as well as hearing problems.

I'm so sorry to hear about how your Mum treated you. With my Mum I think it has given her major health anxiety and must have been a huge weight to carry all these years.

Sorry I realise I have not actually asked you anything but it's good to read about other people's experiences.

@KylieKangaroo Funny you should say that, someone I know said something very similar about a family member with a cleft.
Your mum sounds adorable. <3

@WoeBeCome It can be that simple as you can have a cleft lip on its own or a cleft palate on its own. Cleft palate means there is a split in the roof of the mouth that continues to the inside of the nose.

@Borntomakeit thankyou and I'm so sorry about your mum. I have worried about my little boy suffering and a couple of times I have wondered if my decision to have him was selfish but he has brought us all so much joy. He has moderate learning difficulties as well as his cleft and has had so many problems with his ears. Despite everything he is an incredibly cheerful soul with a very adorable slightly wonky smile.

@ÉireannachÉÉÉÉÉÉÉÉÉÉÉÉ Aw, thanks. I didn't even know it was bad until it was pointed out to me in my 20s. I just believed it would have been better if I'd have been aborted.

My son (late 30's) was born with a cleft lip and palate but his experience sounds vastly different to yours which frankly sounds horrendous! My heart goes out to you. He was 6 weeks premature born with breathing difficulties and jaundice. 11 days in an incubator then home. Had like almost a denture plate fitted at 2 months secured by wire to cheeks and plaster over gap under nose to stop cleft getting wider. Lip repair at 5 months, palate at 9 months. Cosmetic op when 5, bone graft at 10 (from hip) Cosmetic op offered and refused (by him) at 15 and 18. Never needed speech therapy, no major ear infections. Some bullying at school but had friends (and still friends now) I was only 19 when I had him and terribly shocked as had never even heard of it but his surgeon, orthodontist and speech therapist (who was our liaison for CLAPA) were hugely supportive as was my family which I think was a major help. I was told his cleft was severe but he seemed not to have the problems that often go with it which is maybe why our experience was so different. His lip is noticeable and nose a bit wonky but I don't see it, just part of who he is. He says people rarely ask him about it now but enjoys making up outlandish stories about rugby accidents and the like, he says it truly doesn't bother him. I had two more children knowing the risks (they weren't actually affected) but point being it didn't and wouldn't have put me off. I did a lot of work with CLAPA when he was young and supported families with new cleft babies. @Borntomakeit I was told by the midwife when he was born he would have to have all his teeth out and have false ones but though there was tooth displacement orthodontic work sorted it and he has lovely straight teeth with no false ones, hopefully there is more education out there about it now.