Forum Medical

Scared of having a baby with cleft lip/palate

14 replies

Abbigailkroon
Hi ladies,

I was born with a cleft lip (schisis) and my husband and I have been trying for our first baby since April 2017. But lately, I’ve been really worried about whether a cleft lip can be hereditary. I’m really scared that I might get pregnant in the future and have a baby with a cleft lip—that’s my biggest fear.

Are there other women who have something similar and are also afraid it might be hereditary and could be passed on to their future children?

Love, Abbigail

Replies

  1. Mari Guest #2

    How big is the chance that your baby has it too? And if your little one is otherwise healthy, I don't see the problem. Are you experiencing any issues with your cleft? My daughter was also born with a cleft, even though my partner and I don't have it. She doesn't have any problems with it. I would really let this go because there are worse things that children are born with that can't be cured.
  2. Abbigailkroon started this #3

    It can be hereditary, but I don't know how big the chance is that my baby could get it.

    I still have issues to this day because I have a cleft lip/palate I was bullied a lot in the past, and every day I'm stared at wherever I go!

    It's nice that your daughter doesn't have any problems with it, but I've experienced that it can be different.

    Of course, there are worse things, that's true for everything, but that doesn't mean this isn't serious. If I had a child with a cleft lip/palate, I would naturally surround them with love and raise them with care, but I would find it very hard because I wouldn't wish it on anyone to have to live like that, being stared at every day and having people gossip.

    I find your response quite short-sighted.
  3. An1990 Guest #4

    You could have it operated on, right? My former teacher had this corrected when they were an adult, and you could obviously see a scar, but it wasn’t exaggerated at all.

    Besides that, I wouldn’t be too worried about it. If that’s the only thing your baby has, it’s not really a big deal, is it? Of course, you want your baby to be “perfect,” but there are also babies born with mental or severe physical issues, so this really seems like just a small thing.

    Greetings
  4. Abbigailkroon started this #5

    Yeah, that's right, you also get operated on there. I was operated on myself when I was 3 months old, and I do have a scar. And still, I was bullied a lot back then and called names (hazelip), and I still get stared at because people notice something different about your face.

    I am a bit scared of that. And I definitely don't want a perfect baby, as long as it's healthy! But a cleft is quite serious because you have to learn to live with it your whole life, with a scar on your face. Again, there are definitely worse things, but that doesn't mean this is nothing.
  5. Abbigailkroon started this #6

    In my family, there are no congenital abnormalities (thankfully) and no one has a syndrome, yet I have a cleft. So I think the chance is quite high that my baby will get it too.
  6. Abbigailkroon started this #7

    Yes, exactly.
  7. Abbigailkroon started this #8

    Hi NL93,

    I have an appointment with my GP next week to discuss this.
  8. anoniem22 #9

    I totally get your fear... I think some people here act like it's no big deal, but bullying, staring, it can all have lifelong consequences. You wouldn't wish that on anyone, especially not on your own child...
  9. Betty Guest #10

    Suppose it really is like that... because you can't control that. What could you do to minimize any potential mental damage?
    You could look for a plastic surgeon with tons of experience in that area.
    You can help your child become mentally stronger. And instead of taking any teasing personally, they can see it as a reflection of the teaser (attention-seekers and followers—how low can you get?).
    It's unpleasant, but pretty normal that people stare when you look different. Maybe you can put a positive spin on it when people stare too long. For example: "Wow, they can fix things so nicely these days, right?"
    And above all, try to make sure your child is assertive (with practice if needed) and has a few comebacks ready, so that bullying is stopped in its tracks before it even starts.
    I know what it's like to be bullied, but I don't play the victim anymore; bullies aren't any better than me. Just look at bullies on Facebook—either they've turned their lives around or they're still sad and lonely
    Ultimately, what matters more is what you can do for others, not how you look.
  10. anoniem22 #11

    That's also quite beautifully said, Betty.
  11. Abbigailkroon started this #12

    Thanks Betty for your advice. Well said. And if it's going to be like that, I'll do everything I can to make sure the bullying is lessened and that he or she can stand up for themselves, maybe with the help of a sport. It's definitely true that bullies usually don't end up better off in life. I've never played the victim; I was able to stand up for myself, and I'll always teach my kids to do the same. But still, it does scare me a bit to have a child with cleft lip/palate. It's just the fact that you wouldn't wish it on anyone, because I know how it feels to have a cleft.
  12. Anoniem Guest #13

    Dear Abbigail,

    I completely understand your fear; I share it myself. Cleft lip/palate is more intense than many people think. "You can just have it operated on," sure, but how "normal" is it to have a baby of a few months old undergo surgery? How "normal" is it for a child to visit the hospital every year to see the cleft team? How "normal" is it that the child can't go to a regular orthodontist but has to go to the hospital? How "normal" is it that a teenager has to undergo such operations because, due to the cleft, various things don't grow properly (e.g., the jaw)? I don't think it's "normal," and the comment "it can be operated on anyway" is extremely short-sighted and probably written by someone without personal experience. You want your child to grow up without all these things (and these are just various examples from me; I only had a cleft lip, so how much more do you have if you have a cleft jaw and/or palate?). In short, I understand your fear!

    I read on the internet that you should take folic acid for more than a month before pregnancy and definitely continue taking it for at least three months while pregnant.

    What did the GP ultimately say?
  13. Abbigailkroon started this #14

    It's so nice that there's finally someone who understands me. When babies are operated on at three months old, and they have years of surgeries and treatments like I did—I had a cleft lip, cleft jaw, and an open palate. I'm 25 now and still dealing with my teeth at the UMC with a special cleft team.

    My GP said it could be hereditary, but it doesn't have to be... When I stopped the pill in April, I started taking folic acid right away, and in October I found out I was pregnant, so I immediately started taking pregnancy vitamins with extra folic acid. Next week on Thursday, I have a detailed 20-week ultrasound at the hospital, and they'll be able to see if my baby has a cleft or something else, so it's going to be a very stressful ultrasound, and I'm really nervous about it.
  14. Trees87 #15

    I also understand your restlessness and fear... but as long as you haven't held your little one in your arms, it's all guessing.
    Just like many physical abnormalities. The "what if..." question plays in your head and will only get an answer after the birth.
    Please don't project your fear onto your baby.... what happened to you won't automatically happen to your child.
    I also know someone in this situation... operated on and never had any problems.
    Stand strong together and give lots of love, that's the most important thing.

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