FAQ - cleft lip
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Can babies with cleft lip/palate use regular bottles or nipples?


My little one will be born with a bilateral cleft lip and palate, and I'm not even going to attempt to nurse directly from my breast, experimenting with the feeders will be stressful enough. I know they make special feeders for them, but my mother in law wants to buy bottles for him, and I don't know how to get the special feeders. Anyone know?

I've already been on cleft advocate, they aren't very helpful. :-\
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from what i have heard, there are special lactation consultants that can help you nurse (if you choose to), and they can also help you find bottles and nipples that will work. ive never personally searched for any, but i am positive they exist, since every baby needs to eat. good luck!! sorry i couldnt be more help!  (+ info)

Cleft lip babies-can anyone give me as much info as possible?


I am 20 weeks pregnant with my first child (baby girl)! In her ultrasounds she has what appears to be a unilateral cleft lip. Feeding advice? Share your story? Surgery info? Anything?
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Hi
First - CONGRATS on your upcoming baby. It's great you are being proactive and getting your ducks in a row so early. It will give you more time to enjoy her when she arrives, and less time spent getting organized. The most important thing to remember is your little girl is SO MUCH MORE than just a cleft lip. She will have cute little toes, fingers, tummy, eyes, personality, etc. Before your child is born it's easy to get caught up in the cleft stuff that you can forget the rest.

My son and husband were both born with unilateral cleft lip and palate. My son is now 6. Each child is different, and so there is no one path you might take, but I can tell you the basics and then tell you some other possibilities that are less likely to occur, but might. I am going to give you a link to a fantastic group of people who will be your best resource and support - www.cleftadvocate.org. You can get more details on what I am writing below on that site. Also, if you have a local children's hospital, they will probably have a craniofacial team. Ours has a general seminar for expecting parents. Cleft Advocate has resources by state, and you should check that out.

Most children will have their lip and nose repair somewhere around 3 months old. Many docs have a weight they want the child at before they do the surgery. Some docs use a Latham device or NAM device, which is a minor procedure to put in prior to the lip repair.

Next your child will have the palate closed (if the palate is involved), usually around 8 months old.

Many children have at least one lip and nose revision, but the age can vary greatly. My son had his at age 5, and will possibly get another as a teen, if he wants it.

Your child will probably need a bone graft done. Docs leave a small opening in the gumline that gets filled in when adult teeth start coming in. My son just had his done at age 6.

That can be everything. Or, there could be other factors. Our son has a short palate, so he needed something called a pharyngeal flap. He also has a major underbite and will need jaw surgery as a teen. Often cleft kids are prone to ear infections and get tubes. Our ENT replaces tubes during other surgeries, so as not be put under an extra time.

Feeding your child can be challenging. There are several types of bottles, so you might want to get a few different kinds to experiment with. If it's only the lip, then most likely she will be able to breastfeed, but if the palate is involved, it's not likely. However, many moms do pump, so if you want to go that route, you can get that arranged.

I know this is a lot of info, but there is lots of support out here. If you have more questions please write me at [email protected]

Good luck!  (+ info)

Why does cleft lip/palate seem to be more common in asians?


I may be completely wrong, but it seems like babies (mainly ones up for adoption) are more likely to be asian if they have cleft abnormalities.
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The highest prevalence rates for (CL +/- P) are reported for Native Americans and Asians. African-Americans have the lowest prevalence rates.

Native Americans: 3.74/1000

Japanese: 0.82/1000 to 3.36/1000

Chinese: 1.45/1000 to 4.04/1000

Caucasians: 1.43/1000 to 1.86/1000

Latin Americans: 1.04/1000

African-Americans: 0.18/1000 to 1.67/1000

Rate of occurrence of CPO is similar for Caucasians, African-Americans, North American natives and Asians.

Prevalence of “cleft uvula” has varied from .02% to 18.8% with the highest numbers found among Chippewa and Navajo and the lowest generally in African-Americans.

During the first six to eight weeks of pregnancy, the shape of the embryo's head is formed. Five primitive tissue lobes grow:

a) one from the top of the head down towards the future upper lip;
b-c) two from the cheeks, which meet the first lobe to form the upper lip;
d-e) and just below, two additional lobes grow from each side, which form the chin and lower lip;
If these tissues fail to meet, a gap appears where the tissues should have joined (fused). This may happen in any single joining site, or simultaneously in several or all of them. The resulting birth defect reflects the locations and severity of individual fusion failures (e.g., from a small lip or palate fissure up to a completely deformed face).

The upper lip is formed earlier than the palate, from the first three lobes named a to c above. Formation of the palate is the last step in joining the five embryonic facial lobes, and involves the back portions of the lobes b and c. These back portions are called palatal shelves, which grow towards each other until they fuse in the middle. This process is very vulnerable to multiple toxic substances, environmental pollutants, and nutritional imbalance. The biologic mechanisms of mutual recognition of the two shelves, and the way how they are glued together, are quite complex and obscure despite intensive scientific research.

The cause of cleft lip and cleft palate formation can be genetic in nature. A specific gene that increases threefold the occurrence of these deformities has been identified in 2004 as reported by the BBC.

Environmental influences may also cause, or interact with genetics to produce, orofacial clefting. Scientists have investigated seasonal causes (such as pesticide exposure); maternal diet and vitamin intake; retinoids, which are members of the vitamin A family; anticonvulsant drugs; alcohol; cigarette use; nitrate compounds; organic solvents; parental exposure to lead; and illegal drugs (cocaine, crack cocaine, heroin, etc.) as teratogens that increase the possibility of clefting.

If a person is born with a cleft, the chances of that person having a child with a cleft, given no other obvious factor, rises to 1 in 14. Research continues to investigate the extent to which Folic acid can reduce the incidence of clefting.

In some cases, cleft palate is caused by syndromes which also cause other problems. Stickler's Syndrome can cause cleft lip and palate, joint pain, and myopia. Loeys-Dietz syndrome can cause cleft palate or bifid uvula, hypertelorism, and aortic aneurysm. Many clefts run in families, even though there does not seem to be any identifiable syndrome present.  (+ info)

how do i cover a cleft lip scar?


I have a cleft lip and i want to know how to cover it up. I don't mind the red bump, but there is this red line that's smooth and annoying. I don't know what to use. Thanks!
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I recommend Creme de la Mer. My son was born with cleft lip and palate, and we use it whenever the scar gets riled up, from a cold or surgery. It's not cheap. We bought a sample size off eBay and it's lasted forever. It immediately takes out the redness. We swear by it.

If you join a group called Cleft Advocate (www.cleftadvocate.org) , you can ask the same question there and get lots of answers from folks who have "been there done that", if you will. They might even recommend something that doesn't cost a small fortune that works for you.

Anyway - good luck finding a product that you like. Hope to see you on cA.  (+ info)

What is the difference between a Cleft Lip and a Cleft Palate?


Just wondering. I looked up the redhead PussyCat Doll that left the group. It said she was born with both.
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A cleft lip is a deformation of the lip such as: a hole in the lip, or a missing piece of the lip at birth.

A cleft palate is a deformation of the hard palate that keeps your nose and your mouth separated such as: a hole in the palate, or a missing piece of the palate.  (+ info)

How long after a cleft lip operation can a 3-month old start sucking her dummy again?


We asked a nurse at the hospital Heidi was staying at this morning, but all she said to us was 'She's 3 months old now - she doesnt need a dummy (pacifier) anymore.' LMAO

Heidi doesnt seem to have any MAJOR issues drinking from a normal AVENT bottle, so how long until she can start sucking her dummy again?
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I'd phone a doctor about this. If she is already sucking on her bottle, I *think* it would be ok to let her have her dummy again  (+ info)

could a doctor be sometimes wrong if they say your child might have a cleft lip?


I'm nine months pregnant and is expecting in 3 weeks and they say she might have a cleft lip but she also said they could be wrong.....PLZ help me
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Yes, hun, every time a doctor says something, it can't be 100%, everyone makes mistakes, even doctors. And since they said "they could be wrong", then it's definitely possible they were. They were only warning you in case she came out with it so you wouldn't be as surprised. Anytime they see something that looks a little out-of-the-norm, they will let you know whether or not they're right.  (+ info)

Can a cleft lip or palate be detected with a normal 2d black and white ultrasound?


I was just wondering, has anyone ever detected it?
i have no history of that in my family or my husbands.. i am just a nervous wreck and cant wait to get a 4d ultrasound done!
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no, only the lip! Sometimes a baby may yawn and you may be lucky, to see, like when my son was scanned 16 yrs ago he yawned so i knew he didnt have one! ! Please email me if you need any help, we have a little girl who is 6 and she was born with a cleft palate (no lip involvement) and my sister had a cleft palate too! I have 4 kids, she is the only one affected !  (+ info)

Can they see if your baby has cleft lip or palate on and ultrasound?


Is it possible to tell or do you find out only when the baby is born?
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they can yes.

at my 20 weeks scan they checked the lips, nose etc. everything.

its not 100% though, but they should check for all that.  (+ info)

I am looking for funding for cleft lip and palate in florida?


I had a cleft lip and palate when i was born and had 2 surguries but still need some dental, reconstructive and cosmetic surguries.
I am 27 years old and just dont have the money for insurance and cant afford that kind of medical care.
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I would ask your doctor if they know of any funding that might be available to you.  (+ info)

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