My child has cleft lip and palate AMA

[Cleftmum44]

There are so many assumptions about clefts so I thought I would do this. Some people just assume things and are happy to be corrected but some think they know better than the surgeons!

What things are people assuming OP?
When was it picked up? In utero or after?

Hi @Cleftmum44
Thanks for this AMA. It’s a delicate subject & one that should be spoken about more often.
Has your DC had surgery for this? How old were they, how old are they now? Will they need any more surgeries?

I had a childhood friend who had this condition. He had surgery as youngster (late 1960’s) which resolved the main structural points but was by no means perfect, visually. This took an awful toll on him psychologically as a child & through much of his life (& he still feels that now.)
Relatively recently he had lip filler & feels so much more confident now.

Some people said he should have had his lip stitched in the delivery room by the midwife. Some people also thought he would have one quick operation and it would be like his cleft was never there. Most people think the lip is the more severe part because it's more visible but actually it's the palate that affects speech and hearing. One person said it was a good thing he was a boy because it's more important for girls to look pretty. Several people thought it was shocking that he was 6 months old when he had his first operation and they were horrified when I took him out of the house before his first operation. Some people think I must have caused his cleft by being an alcoholic or a drug user.

His lip was picked up at the 20 week scan. They thought he probably had a cleft palate as well but that wasn't officially confirmed until he was born.

Some people said he should have had his lip stitched in the delivery room by the midwife. Some people also thought he would have one quick operation and it would be like his cleft was never there. Most people think the lip is the more severe part because it's more visible but actually it's the palate that affects speech and hearing. One person said it was a good thing he was a boy because it's more important for girls to look pretty. Several people thought it was shocking that he was 6 months old when he had his first operation and they were horrified when I took him out of the house before his first operation. Some people think I must have caused his cleft by being an alcoholic or a drug user.

His lip was picked up at the 20 week scan. They thought he probably had a cleft palate as well but that wasn't officially confirmed until he was born.

Some people said he should have had his lip stitched in the delivery room by the midwife. Some people also thought he would have one quick operation and it would be like his cleft was never there. Most people think the lip is the more severe part because it's more visible but actually it's the palate that affects speech and hearing. One person said it was a good thing he was a boy because it's more important for girls to look pretty. Several people thought it was shocking that he was 6 months old when he had his first operation and they were horrified when I took him out of the house before his first operation. Some people think I must have caused his cleft by being an alcoholic or a drug user.

His lip was picked up at the 20 week scan. They thought he probably had a cleft palate as well but that wasn't officially confirmed until he was born.

Some people said he should have had his lip stitched in the delivery room by the midwife. Some people also thought he would have one quick operation and it would be like his cleft was never there. Most people think the lip is the more severe part because it's more visible but actually it's the palate that affects speech and hearing. One person said it was a good thing he was a boy because it's more important for girls to look pretty. Several people thought it was shocking that he was 6 months old when he had his first operation and they were horrified when I took him out of the house before his first operation. Some people think I must have caused his cleft by being an alcoholic or a drug user.

His lip was picked up at the 20 week scan. They thought he probably had a cleft palate as well but that wasn't officially confirmed until he was born.

Apologies for the multiple posts

My dc has had 3 operations that were cleft repairs aged 6 months, 14 months and 11 years. He's also had other operations that are not technically cleft related but are more common in children with cleft palate like grommets, teeth taken out etc. He's had 5 of those. He is 13 now. He will need at least one more surgery to correct his jaw when he is an adult. He is prone to having growths in his ears (called a cholesteatoma) so he may need more of those removed. If he wants to when he is older he can have cosmetic surgery to improve the shape of his nose, make his scar less visible etc. He can also have lip filler like your friend did.

At the moment he is happy with how he looks. I think he looks lovely as he is but I would be fully supportive if he wants more surgery in the future.

Thanks OP. Bless him, that’s a lot of ops for one so young. Never heard of the ear growths, do they interfere with his hearing?

What do you wish people knew? Any advice for people finding out their DC have it?

If a friend/acquaintance or even a stranger admired your new baby would you want them to mention it or not?

Does your son mind now if someone asks about his scar? Or does no one ask?

They do. He's had them removed once and now he has yearly check ups to see if they grow back.

I wish people knew how complicated the operations are. My son's surgeon is a kind of artist and he is amazing at what he does.

My advice would be that the pregnancy is the hardest bit, and then the first operation. The pregnancy is hard because you know the diagnosis but you don't know your baby yet so its really scary. Then when they are born you fall in love with them. The first operation is really hard but later on when you know and trust the team it's a lot easier.

I never minded if people mentioned it or not. Although quite a few people came up to me when he was little and told me they know someone who had a cleft.

Ds gets asked sometimes, always politely. He doesn't mind and he is very proud of his cleft. Sometimes we go to online meet ups with other children who have clefts and he really loves that.

Im so sorry youve met such dicks

How was feeding as a baby?

He couldn't suck at all so he had a feeding tube to begin with and then he had these bottles that you could squeeze like a shampoo bottle to get the milk in his mouth. I found it really difficult and he took ages to feed, about the same time as an episode of downton abbey!

My DM who lived into her 90s was born with a cleft palate and my niece who is in her 30s was born with a cleft lip, or a hare lip as they were sometimes still called then.
My DM had a false roof of her mouth put in when she was five but it broke down because she cried so much. They did it again when she was 11, this time successfully. I asked her once what the roof felt like and she said she couldn’t tell me because it was really all she’s known for most of her life and felt normal to her. I don’t know if it was artificial or created with her own bone and tissue but I think it was artificial. She had speech therapy and no further problems.
My niece has her first cleft lip surgery when she was about five months old and several more surgeries since including one where a piece of bone was taken from her hip and put in her mouth. I don’t think her lip is noticeable. Maybe if you really studied her face close up looking for it but certainly not otherwise.
I do remember DM wondered if there was a genetic link. I must google that actually.

Ah, there can be a genetic link but it’s a low chance from grandparent to grandchild apparently. Interesting.

People were surprised he had to wait until he was 6 months do you mean? Why DO they wait so long?

We're you put under any pressure during pregnancy to not continue the pregnancy?

Not continue a pregnancy due to a cleft lip? Bloody hell that would be eugenics at its finest.

Let's be clear. I'm not suggesting that should be a thing.

But anecdotaly I know hospitals certainly used to be much more willing / encouraging to end a pregnancy over a wbe host of issues Inc cleft lip / palate.

Wow that seems crazy to me a hospital would even think that though

I mean maybe it's more come a condition and there's other risks, I don't know. I know as someone who's kid has wonky chromosomes, I'm glad they didn't know until after treatment

Has he had any speech therapy? If so, what was your experience and why?