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Old 01-14-2013, 10:59 AM   #1
chandni3
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Possible cleft palate

This probably should be in pregnancy forum but I was hoping to get more responses here. My 20 wk ultrasound showed a possible cleft palate. The midwife did say palate, not lip. They're going to send me for a more detailed ultrasound, just waiting to hear when. Has anyone else experienced this? For some reason I'm actually not surprised. I've had this funny feeling that the baby had a cleft palate or something wrong. Maybe it's just because I was too sick to take my vitamins, but I'm really thinking that the second ultrasound is going to confirm the first. My belly is pretty small and the ultrasound technician said she could see everything well. But I'm still hoping of course that everything is ok. Can anyone share their experience? Does anyone have a baby that was born with a cleft palate? I guess I might not be able to breastfeed? Will he have to stay in the NICU? At what age can they do an operation to fix it? I can still have a natural hospital birth right? Feeling very sad for my little boy right now. I hope the next ultrasound is soon.

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Old 01-14-2013, 11:23 AM   #2
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Re: Possible cleft palate

I really can't answer any of your questions because I don't know about what happens early on. But, I have worked with a lot of children with cleft palates and lips. I used to be an orthodontic assistant for an orthodontist who specialized in this. Your son will have some surgeries (one or more depending on the severity) and need some ortho work, but he will be just fine. These kids are some of the sweetest kids I've ever met. They are perfect just the way they are. Your son will have a wonderfully full life. He is lucky to have a mom who cares so much and you will be blessed by his strength which will amaze you and his sweetness.
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Old 01-14-2013, 11:45 AM   #3
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Re: Possible cleft palate

I have a friend whose youngest was born with cleft palate. I don't know for sure if she was able to breastfeed, but she was at least able to pump and then feed the baby breastmilk. I know they did at least one surgery before she was a year, but she's had 3-4, I think and is only 18 months old now. I don't recall her having a NICU stay, either. She had a repeat c-section, but that was because of insurance issues, but because it was medically necessary. A lot of it will probably depend on how bad the cleft is.
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Old 01-14-2013, 12:13 PM   #4
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Re: Possible cleft palate

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Originally Posted by chandni3 View Post
Can anyone share their experience? Does anyone have a baby that was born with a cleft palate? I guess I might not be able to breastfeed? Will he have to stay in the NICU? At what age can they do an operation to fix it? I can still have a natural hospital birth right? Feeling very sad for my little boy right now. I hope the next ultrasound is soon.
Cleft palate can often be repaired through surgery. In the grand scheme of things it's not a HUGE deal, but definitely something that will require planning. The baby will not necessarily have to stay in the NICU. I would let the hospital know you'd like to see the pediatric SLP about feeding options for your baby, a consult before birth if possible. Some can nurse, some can't, it just depends. They may require special bottles or an SNS. The hospital should have SLPs on staff who deal with these issues. I don't remember the age of repair, but it's not right away.

The Shrine Children's Hospital provides all medical care related to cleft palates, including surgery, free of charge for all qualifying conditions regardless of income. They have some of the best surgical specialists. PM me if you want and I can send you a link.
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Old 01-15-2013, 07:01 AM   #5
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A good friend if mine has a son with a cleft lip and palate. She was not able to breastfeed but like I said, it was his lip too. I'm not sure if just a cleft palate would mean you couldn't. He had his surgery to repair his lip a couple months ago and they're getting ready to do the surgery for the palate now. Good luck with everything! Maybe you'll get lucky and find out your LO is just fine.
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Old 01-15-2013, 08:51 AM   #6
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Re: Possible cleft palate

No personal experience, but I just read this article a few days ago; it's someone's story of his twins and their cleft palates. Might be a good read if you want to get into someone else's experience with it.

In particular, the article talks about this approach, using orthopedic devices to help correct some of the defect and prepare the baby for surgery:

Quote:
We worked under the guidance of Barry Grayson, an innovative orthodontist who is a member of the cleft-palate team at New York University Medical Center’s Institute of Reconstructive Plastic Surgery. Grayson and his partner, Court Cutting, a surgeon (and yes, Cutting is his real name), are revolutionizing the treatment of children with clefts by taking advantage of the fact that babies’ tissue, cartilage, and bones are highly malleable.

In the months prior to Cutting’s surgery, Grayson’s orthopedics—which took us hours each day to place and manipulate—aligned the lips, gums, and nose, minimizing imperfections to the point where Cutting, the city’s preeminent cleft surgeon, was able to fix the entire region in one operation.
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Old 01-15-2013, 09:32 AM   #7
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Re: Possible cleft palate

You might also check on the Facebook tongue tie/lip tie page. Cleft lips/palates and TTs are related, and usually a baby with a cleft palate will also have a tongue tie, so it's important to investigate that after birth also, as it can make a huge difference to breastfeeding success. Several moms on the TT page have children also with cleft palates.
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Old 01-15-2013, 11:05 AM   #8
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Re: Possible cleft palate

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Originally Posted by momtojande View Post
No personal experience, but I just read this article a few days ago; it's someone's story of his twins and their cleft palates. Might be a good read if you want to get into someone else's experience with it.

In particular, the article talks about this approach, using orthopedic devices to help correct some of the defect and prepare the baby for surgery:
Thanks for sharing that article. I was crying while reading it though. I don't know how I'll handle my poor baby having to go through that. I'm still waiting to find out when the ultrasound will be. It's hard not knowing for sure if something is wrong.
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Old 01-15-2013, 05:56 PM   #9
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Re: Possible cleft palate

My good friends had a son born with cleft lip and palate. It wasn't something they knew about in advance. They are perfectly healthy babies so there is no reason for anything complex about the birth. No special hospital is even required for the birth. I also have friends who are expecting a baby this spring with at least a cleft lip.

You will need a bit of feeding information after the baby is born and nursing will depend on how the defect presents. My friends couldn't nurse because of the cleft palate that required a bottle with a really long nipple and then they squeezed the milk in because he was unable to suck. She pumped and bottle fed.

They started with a retainer type ortho thing and then surgery. It's not a immediate thing, you will take your lovely baby home and these things will be sorted later. Here the Children's Hospital has an entire centre for the repair of cleft lips and palates. It's pretty common.

Their son starts Kindergarten this year and the average person can't tell he's had surgery.
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Old 01-16-2013, 12:09 PM   #10
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Re: Possible cleft palate

Oh sweetie!

You just have so much going on, eh? You just started you home DC...and you now have something else to worry about.

Honestly, until you mentioned about bfing, it had never struck me as something having such ramifications. I thought surgery always repaired CFs. I just realised that that repair only happens later..not in infants.

I can see you are already grieving the 'possible' loss of the bfing relationship......please dont. The second u/s may put your mind at ease.
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