Positive Stories of Cleft Lip/Palate
August 16, 2024 5:23 AM Subscribe
I’m currently 21 weeks pregnant and learned this week during my anatomy scan that our little boy has an apparent cleft lip/palate. I’m seeking positive and hopeful personal stories, both from parents and from people who were born with a cleft, or know someone who was, to help feel more at peace about this. Stories of adjusting to other unexpected news in pregnancy and regaining joy in the process are also welcome.
This is our first baby and my pregnancy to this point has been so uncomplicatedly joyful, it’s been a big shift to face this unexpected news. We’re in the midst of a lot of additional testing/scanning to confirm that the cleft is an isolated issue, but in the meantime I’ve been assailed by sadness and worry. Will it be harder to bond with my baby, who I already love so much? How can I cope with him starting off life with this challenge, having to get multiple surgeries when he’s so tiny? What will the results of surgery be, will you always be able to tell, how will that affect his self-esteem and social life? What other lingering effects will there be – will his speech suffer, will he need more surgeries later in childhood and adolescence? How can I adapt to this new vision of parenting, which I’ve longed for my whole life, and bring back the excitement and positivity I was feeling in this process?
I’ve been comforted by stories I’ve read elsewhere that go something like “My mom was born with a cleft lip and I didn’t even know until she told me in middle school” or “I loved my baby’s cleft smile so much I was a little sad when it was gone” or “I was born with a cleft lip and don’t feel that it has held be back at all.” I’m reaching out for more stories like this, as well as stories from parents who received unexpected news in pregnancy and were able to move forward happily.
This is our first baby and my pregnancy to this point has been so uncomplicatedly joyful, it’s been a big shift to face this unexpected news. We’re in the midst of a lot of additional testing/scanning to confirm that the cleft is an isolated issue, but in the meantime I’ve been assailed by sadness and worry. Will it be harder to bond with my baby, who I already love so much? How can I cope with him starting off life with this challenge, having to get multiple surgeries when he’s so tiny? What will the results of surgery be, will you always be able to tell, how will that affect his self-esteem and social life? What other lingering effects will there be – will his speech suffer, will he need more surgeries later in childhood and adolescence? How can I adapt to this new vision of parenting, which I’ve longed for my whole life, and bring back the excitement and positivity I was feeling in this process?
I’ve been comforted by stories I’ve read elsewhere that go something like “My mom was born with a cleft lip and I didn’t even know until she told me in middle school” or “I loved my baby’s cleft smile so much I was a little sad when it was gone” or “I was born with a cleft lip and don’t feel that it has held be back at all.” I’m reaching out for more stories like this, as well as stories from parents who received unexpected news in pregnancy and were able to move forward happily.
Take a deep breath.
As far as problems at birth are concerned this is so incredibly minor. I had to have heart surgery at three days old. There is so much that modern medicine can do, and the babies come out the other end and go on to live full, happy lives. It will be okay.
posted by Alensin at 6:11 AM on August 16 [10 favorites]
As far as problems at birth are concerned this is so incredibly minor. I had to have heart surgery at three days old. There is so much that modern medicine can do, and the babies come out the other end and go on to live full, happy lives. It will be okay.
posted by Alensin at 6:11 AM on August 16 [10 favorites]
If you're interested in knowing that there are quite a few very successful actors who were born with cleft lips and palates, you can read about them here. You might be surprised, and heartened.
posted by Dolley at 6:28 AM on August 16 [4 favorites]
posted by Dolley at 6:28 AM on August 16 [4 favorites]
Warning that my comment is pretty RealTalk as I lost a baby a few days after birth, and also have had babies with health challenges (not exactly the same but I'll focus on the management bit.)
I'm sorry that you are having to deal with this; a complicated pregnancy and birth is always different. Welcome to Planet Complicated Pregnancy, where you start to feel like an alien even from other pregnant people.
in the meantime I’ve been assailed by sadness and worry
This is normal! This is okay! Being a parent is a lifelong relationship, and it comes with every emotion you can think of and more. A family is a group that is there for all the emotions. I mean, I am sorry for you that sadness and worry has come today and not the day your child falls rock climbing and breaks his arm.
Will it be harder to bond with my baby, who I already love so much?
Short answer: No.
My daughter was injured during birth and was, for her short life, profoundly disabled. Had she lived she would never have walked or talked or seen or heard. I loved her intensely, still mourn her, and although I did not end up having to live the reality of that, love was never, ever the question.
That said, 'bonding' is something that different people experience differently at different times and it's okay to have moments you feel a bit alienated. If your baby has to go straight to surgery that will feel weird; when your baby has monitors and wounds, that will be weird. What makes humans neat is often we hang in there anyway.
How can I cope with him starting off life with this challenge, having to get multiple surgeries when he’s so tiny?
You're doing great reaching out for help. Talk to your medical team about support groups etc. But here's the real answer: decent parents cope. You cope because you have no choice. My youngest was in NICU for 5 days with jaundice, after my daughter died there. I cried; I felt like I couldn't do it again and...I sat there and actually, I do have fond memories of when I got to hold him, sing to him, hang with other NICU moms. You will cope fine.
How can I adapt to this new vision of parenting, which I’ve longed for my whole life, and bring back the excitement and positivity I was feeling in this process?
After my daughter died, I honestly rarely had a moment of joy in the next pregnancy, my oldest son. I was terrified, depressed, lonely (my husband was grieving; I wasn't in touch with women in my situation), tired, all the bad things. I am sad for me -- it took probably about 5-6 years of grieving my daughter every March that it occurred to me to grieve for myself. I am sorry for you that you have lost some excitement and positivity. You may find it again -- I would think so -- or you may have a longer period of feeling those things. It's hard.
But once my son was here, really about when he started walking, I got All The Joy. He's turning 19 next week and I am blissfully proud of him. Other parents got all the pregnancy joy but maybe their kid was depressed for 6 months at 15 and they were worried sick. In each life, comes all the things.
There is no guarantee that you get joy all the time at every stage. But please trust me, there is joy ahead for you. It may be next week; it may be when you see him; it may be after 3 surgeries. Your child is very likely going to be able to run, swim, jump on you in the morning, have a tickle fight - so many things.
That doesn't change that right now, you are scared for him. You have bonded with both this wriggly fetus and the idea of your child being in the world and you parenting that child. With that bond comes all the things. That's okay.
All that said, get support. It's so good you asked and I hope parents who have direct experience in this are here, and if not, keep looking.
posted by warriorqueen at 6:31 AM on August 16 [44 favorites]
I'm sorry that you are having to deal with this; a complicated pregnancy and birth is always different. Welcome to Planet Complicated Pregnancy, where you start to feel like an alien even from other pregnant people.
in the meantime I’ve been assailed by sadness and worry
This is normal! This is okay! Being a parent is a lifelong relationship, and it comes with every emotion you can think of and more. A family is a group that is there for all the emotions. I mean, I am sorry for you that sadness and worry has come today and not the day your child falls rock climbing and breaks his arm.
Will it be harder to bond with my baby, who I already love so much?
Short answer: No.
My daughter was injured during birth and was, for her short life, profoundly disabled. Had she lived she would never have walked or talked or seen or heard. I loved her intensely, still mourn her, and although I did not end up having to live the reality of that, love was never, ever the question.
That said, 'bonding' is something that different people experience differently at different times and it's okay to have moments you feel a bit alienated. If your baby has to go straight to surgery that will feel weird; when your baby has monitors and wounds, that will be weird. What makes humans neat is often we hang in there anyway.
How can I cope with him starting off life with this challenge, having to get multiple surgeries when he’s so tiny?
You're doing great reaching out for help. Talk to your medical team about support groups etc. But here's the real answer: decent parents cope. You cope because you have no choice. My youngest was in NICU for 5 days with jaundice, after my daughter died there. I cried; I felt like I couldn't do it again and...I sat there and actually, I do have fond memories of when I got to hold him, sing to him, hang with other NICU moms. You will cope fine.
How can I adapt to this new vision of parenting, which I’ve longed for my whole life, and bring back the excitement and positivity I was feeling in this process?
After my daughter died, I honestly rarely had a moment of joy in the next pregnancy, my oldest son. I was terrified, depressed, lonely (my husband was grieving; I wasn't in touch with women in my situation), tired, all the bad things. I am sad for me -- it took probably about 5-6 years of grieving my daughter every March that it occurred to me to grieve for myself. I am sorry for you that you have lost some excitement and positivity. You may find it again -- I would think so -- or you may have a longer period of feeling those things. It's hard.
But once my son was here, really about when he started walking, I got All The Joy. He's turning 19 next week and I am blissfully proud of him. Other parents got all the pregnancy joy but maybe their kid was depressed for 6 months at 15 and they were worried sick. In each life, comes all the things.
There is no guarantee that you get joy all the time at every stage. But please trust me, there is joy ahead for you. It may be next week; it may be when you see him; it may be after 3 surgeries. Your child is very likely going to be able to run, swim, jump on you in the morning, have a tickle fight - so many things.
That doesn't change that right now, you are scared for him. You have bonded with both this wriggly fetus and the idea of your child being in the world and you parenting that child. With that bond comes all the things. That's okay.
All that said, get support. It's so good you asked and I hope parents who have direct experience in this are here, and if not, keep looking.
posted by warriorqueen at 6:31 AM on August 16 [44 favorites]
This is an easy "fix"! And you will love your child no matter what they come out "looking like." Have no fear!
posted by atomicstone at 7:06 AM on August 16 [1 favorite]
posted by atomicstone at 7:06 AM on August 16 [1 favorite]
will you always be able to tell, how will that affect his self-esteem and social life?
Maybe I imprinted on Joaquin Phoenix at an impressionable age, but I've actually always thought the lip scar is a feature enhancer, and kind of hot.
I know a few adults who were born with a cleft palate, and I can always tell (I am on high Joaquin Phoenix alert and also wanted to be a reconstructive surgeon for a long time when I was a kid so am above average familiar with it) but I would guess most other folks don't even notice. They all live perfectly happy, normal lives with spouses and children and everything. One of these folks has had to have multiple heart surgeries well into his 30s as a related condition, but otherwise his life is indistinguishable from any other person with a heart condition.
posted by phunniemee at 7:24 AM on August 16 [2 favorites]
Maybe I imprinted on Joaquin Phoenix at an impressionable age, but I've actually always thought the lip scar is a feature enhancer, and kind of hot.
I know a few adults who were born with a cleft palate, and I can always tell (I am on high Joaquin Phoenix alert and also wanted to be a reconstructive surgeon for a long time when I was a kid so am above average familiar with it) but I would guess most other folks don't even notice. They all live perfectly happy, normal lives with spouses and children and everything. One of these folks has had to have multiple heart surgeries well into his 30s as a related condition, but otherwise his life is indistinguishable from any other person with a heart condition.
posted by phunniemee at 7:24 AM on August 16 [2 favorites]
My younger brother had a cleft palate (not lip) when he was born, and it was fine. I remember when he had the surgery, he had to have these rigid tubes on his arms so he didn't stick his fingers in his mouth and disturb the surgery site. He was fine then and is fine now, it didn't affect him in any way growing up. He is a thriving adult.
posted by number9dream at 7:25 AM on August 16 [1 favorite]
posted by number9dream at 7:25 AM on August 16 [1 favorite]
2 people I'm close to were born with cleft palates and did not get them repaired as a baby (I don't think that it is as common to wait anymore). I was also a child at the time and did not know that they had cleft palates until I heard they were having surgery for it (one at about 8, the other at about 13). They both ended up having their surgeries due to very minor speech impediments that I also never noticed.
These people were not related to each other, so I have to guess that it is a pretty common procedure. They were both back in school very quickly, to me it seemed along the lines of dental surgery where you might have to change what you eat for a while, but not a difficult recovery.
posted by Eyelash at 7:30 AM on August 16
These people were not related to each other, so I have to guess that it is a pretty common procedure. They were both back in school very quickly, to me it seemed along the lines of dental surgery where you might have to change what you eat for a while, but not a difficult recovery.
posted by Eyelash at 7:30 AM on August 16
Congrats on your pregnancy!! <3
Clefts are super common and your baby will have an awesome life! I know a bunch of people with clefts and they're all happy, successful people with amazing lives. Lots of well-known people have clefts. Might be helpful for you to follow some other adults, kids, and babies with clefts on social media. Adults because you can see what a minor part of their adult life the cleft is, and kiddos n' babies because you can learn feeing / speech strategies that might be useful, and observe how the repair journey goes.
Here are a few accounts:
Indigenous Baddie
Nikki Payne, hilarious comedian)
Cleftproud
Instagram Hashtag #Cleftlip
posted by nouvelle-personne at 7:38 AM on August 16 [1 favorite]
Clefts are super common and your baby will have an awesome life! I know a bunch of people with clefts and they're all happy, successful people with amazing lives. Lots of well-known people have clefts. Might be helpful for you to follow some other adults, kids, and babies with clefts on social media. Adults because you can see what a minor part of their adult life the cleft is, and kiddos n' babies because you can learn feeing / speech strategies that might be useful, and observe how the repair journey goes.
Here are a few accounts:
Indigenous Baddie
Nikki Payne, hilarious comedian)
Cleftproud
Instagram Hashtag #Cleftlip
posted by nouvelle-personne at 7:38 AM on August 16 [1 favorite]
Cleft Lip and Palate Association is a UK based support group with an on-line parental board and several upcoming events, tons of resources and stories and photo galleries. And totally agree that cleft lip and/or palate can look much more scary initially that it turns out to be given the available care; so many people with minimal recollection at all for some of the very easy fixes!
posted by beaning at 7:42 AM on August 16 [2 favorites]
posted by beaning at 7:42 AM on August 16 [2 favorites]
When I was about 7 or 8 in the mid 1980s, our next door neighbor's wife brought home their new baby. She was beautiful and she had a cleft lip. It was fairly extensive. They were open and honest about it and we were all admonished not to make fun of the baby (because kids can be assholes). We moved shortly thereafter but my parents stayed in touch with hers. She had several corrective surgeries and today she is a nurse with a beautiful smile that you can barely tell was ever anything but normal. If they can do that in the 80s, just imagine what amazing outcomes can be performed today.
posted by tafetta, darling! at 8:30 AM on August 16
posted by tafetta, darling! at 8:30 AM on August 16
Welcome to parenthood. So many mixed emotions.
My second daughter was born with significant strawberry marks all over her face. People would ask me if she were injured (it did look like an injury). They faded significantly within 18 months and now you can barely see them (she’ll be 3 next month) and now I miss them. I imagine what she would look like if she still had them. I look at photos of her as a young baby and the marks on her face in photos are somehow symbolic of that time for me.
You sound like you’re going to be a very thoughtful, caring parent. Wishing you an uneventful pregnancy after this, and a very happy newborn period.
posted by samthemander at 9:14 AM on August 16 [1 favorite]
My second daughter was born with significant strawberry marks all over her face. People would ask me if she were injured (it did look like an injury). They faded significantly within 18 months and now you can barely see them (she’ll be 3 next month) and now I miss them. I imagine what she would look like if she still had them. I look at photos of her as a young baby and the marks on her face in photos are somehow symbolic of that time for me.
You sound like you’re going to be a very thoughtful, caring parent. Wishing you an uneventful pregnancy after this, and a very happy newborn period.
posted by samthemander at 9:14 AM on August 16 [1 favorite]
I was born with a cleft palate, had it fixed when I was about 1, and today nobody would ever know. This was 50+ years ago, and the surgical procedure has surely improved a lot since then.
(The only remnant is that I have a tiny, basically imperceptible hole in the roof of my mouth that I can use to entertain myself by sucking air through it and making squeaky noises. But again, my surgery was a long time ago, and I highly doubt that this would happen today.)
posted by velvet_n_purrs at 9:31 AM on August 16 [4 favorites]
(The only remnant is that I have a tiny, basically imperceptible hole in the roof of my mouth that I can use to entertain myself by sucking air through it and making squeaky noises. But again, my surgery was a long time ago, and I highly doubt that this would happen today.)
posted by velvet_n_purrs at 9:31 AM on August 16 [4 favorites]
The second son of a good friend of mine was born with a cleft lip and palate. He's 12 now, and one of the sweetest and happiest kids of my acquaintance. His scar is subtle- you have to look for it to see it.
Before his parents introduced him as an infant, they let it be known what to expect. He had a plastic appliance he needed to wear to help with breathing and eating, but he was an adorable baby.
He had a series of surgeries at various ages, including several as an infant and a few more as he grew. The doctors were able to give his parents a pretty good long-term plan of when they should happen, so they were always well prepared for the operations. I think he might have had his last surgery a few years ago.
posted by uberfunk at 1:51 PM on August 16 [1 favorite]
Before his parents introduced him as an infant, they let it be known what to expect. He had a plastic appliance he needed to wear to help with breathing and eating, but he was an adorable baby.
He had a series of surgeries at various ages, including several as an infant and a few more as he grew. The doctors were able to give his parents a pretty good long-term plan of when they should happen, so they were always well prepared for the operations. I think he might have had his last surgery a few years ago.
posted by uberfunk at 1:51 PM on August 16 [1 favorite]
Approaching this from a slightly different angle – one of my colleagues is a paediatric plastic surgeon, and has worked extensively with patients with cleft lips and palates, all around the world. He is one of the smartest, most caring, skilled people I've ever had the pleasure to work with, and he takes great pride in caring for his patients, following the accomplishments of "his kids" for years after their treatment. I suspect that he is emblematic of many people in his field, and I hope that you and your baby receive the same tender care and excellent results.
Also, I learned just six weeks ago that one of my childhood friends had a cleft lip that was fixed shortly after birth. We're 46 and have known each other since fourth grade. I'd never noticed, and she'd never brought it up because it was such a small part of her life story – she doesn't remember it.
I wish you all the best!
posted by notquitejane at 1:54 PM on August 16
Also, I learned just six weeks ago that one of my childhood friends had a cleft lip that was fixed shortly after birth. We're 46 and have known each other since fourth grade. I'd never noticed, and she'd never brought it up because it was such a small part of her life story – she doesn't remember it.
I wish you all the best!
posted by notquitejane at 1:54 PM on August 16
I have a cleft lip and palate! It’s no big deal.
posted by 8603 at 3:11 PM on August 16 [2 favorites]
posted by 8603 at 3:11 PM on August 16 [2 favorites]
I knew a guy in high school who told a story about this. He was very successful in public speaking competitions at the local level and had qualified for a major competition. To prepare him, one of the teacher started giving him some extensive one-on-one coaching. He had been practicing his speech and so the teacher said, you did a fabulous job, but one little thing: I don't know if you've noticed this, but you don't ever close your mouth while you're speaking. Could you try to do that between sentences? In fact, he could not. "And that," he said, "is how I found out I have a cleft lip." He was 18!
posted by capricorn at 9:44 AM on August 17
posted by capricorn at 9:44 AM on August 17
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i hadn't really noticed, but i guess it was a detail. everyone looks different! that's a joy of this world. it's great that you have this new information & a plan to go forward. as you clearly are very caring for this new person who is soon arriving in the world, i'm sure they'll be fine. congratulations!
posted by HearHere at 6:08 AM on August 16 [1 favorite]