Cleft Facts
What is a Cleft?
Cleft means split or separation of parts. During early pregnancy separate areas of the face develop and then join together. If some parts do not join properly the result is a cleft, the type and severity of which varies. Cleft lip and palate can occur separately or together.
A cleft lip can range from a slight notch in the lip to complete separation in one or both sides of the lip extending up and into the nose. A cleft on one side is called a unilateral cleft; if a cleft occurs on both sides it is called a bilateral cleft.
A cleft palate occurs when the roof of the mouth has not joined completely. The back of the palate is called the soft palate and the front is known as the hard palate. A cleft palate can range from just an opening at the back of the soft palate to a complete separation of the roof of the mouth (soft and hard palate). A sub-mucous cleft is a cleft palate that has been covered by a layer of skin.
What Causes a Cleft?
This is usually the first question every parent of a child born with a cleft wants answered. There is unfortunately no simple answer to this question as a combination of environmental factors and genetics come into play. You should not focus on blaming anyone for what has happened, no one will be able to give you an accurate reason why. Focus your energy on learning how to overcome any challenges that the cleft may bring you and your family.
Statistics
In 60% of children born with a cleft, there is no obvious family history of this condition. In these cases the cleft can be called ‘multifactorial’. Genetics does play a part in every child who has a cleft.
For further information refer to: Genetics & Recurrence
Cleft Lip: in New Zealand, 11 out of every 10 000 European children and 7 out of every 10 000 Polynesian children will be born with a cleft lip. Unilateral (one sided) clefts are more likely to affect the left side and Bilateral (double) clefts are more often found in boys than girls.
Cleft Palate: in New Zealand, 7 out of every 10 000 European children and 18 out of every 10 000 Polynesian children will be born with a cleft palate. Cleft palate is more common in girls than boys. A cleft palate can affect either the hard (front) palate and/or the soft (back) palate. A submucous cleft of the soft palate may hardly be visible to the eye but will affect feeding and speech and still requires surgery to correct.
Prevention
Current research recommends taking 0.8mg Folic acid each day at least one month before conception and during the first 3 months of pregnancy. The role of using higher doses of folic acid in further reduction of the risk of clefting is being investigated with currently no firm conclusions or recommendations having been reached. It is also very important to seek advice when taking any kind of medication during pregnancy. Avoidance of recreational drugs, smoking and alcohol are advised in any pregnancy. It is important to point out however that these measures may reduce the risk but do not guarantee the birth of an infant without a cleft.
The lip and palate should join up within the first 12 weeks of pregnancy, if they don’t the child will be born with a cleft. A cleft lip can be detected during the 18-week ultrasound (although they are still often missed); a cleft palate is very difficult to detect before birth.
For further information refer to: Antenatal Diagnosis
June 10th, 2006 10:38
hi i have a cleftlip/palate baby of 7 months of age. i am currently having trouble feeding him solids with a spoon.
June 11th, 2006 20:26
Hi Karen,
Firstly, hi! I am mum to Jorja aged 2 1/2 who was born with a unilateral cleft lip and palate.
What are the details of the trouble you are having feeding solids?
Has baby unilateral or bilateral cleft? Has repair been made to lip?
When did you start solids? Any reflux problems? and any other details would be great - I would be happy to try and help you!
Kelly
June 26th, 2006 03:41
Hello,
I am a graduate student at Appalachian State University (Boone, NC)currently studying cleft palate and associated feeding and communicative difficulties. I would appreciate the opportunity to gather more information from a parent’s perspective in the study of these issues. Please feel free to contact me at asucdmail@yahoo.com with further details.
Thank you,
Serena
June 27th, 2006 23:01
Karen, I had a lot of trouble with choking, etc when feeding my son from a spoon. I suggest making the solids very runny and using the softcup feeder like a spoon. Also have the child lying back slightly - I remember my son choking and vomiting as the food got stuck on his tongue. Make sure the food is fairly runny and use gravity to your advantage. You might have to perserve with runny foods for a lot longer than most children do. Until the palate is repaired it will be difficult for the child to move solids from the front to the back of the mouth. Hope that helps!
July 2nd, 2006 23:15
Hi,
I’ve just started feeding my 6 month old son solids. He has a unilateral cleft lip & palate. Farex baby rice seems to be easiest (pear & banana). I started off making it runny & feeding it through a bottle and now he’s getting better with a spoon. It’s really messy though! I’ve found he doesn’t like the fruit as it stings when it gets up his nose, poor darling!
Victoria
July 5th, 2006 16:04
hi kelly
my son’s name is dylan.dylan is now 8mnths old.he has unilatelal cleft lip and palate,GERD, choanal atresia(blocked nose pasage)
i quit trying to feed him as soon as i noticed he could not swallow and breathe at the same time. i try to atleast suck on a big piece of fruit or meat anything bigger than his mout but he manages to bite off little pieces and tries to swallow and chokes. it is very hard.I buy gerbers now and put them inside his bottle for all feedings he is underweight. there are no near future reconstructive operations for him so this problem is going to last a while. i will be thank full for any advice on how to help my son eat.
October 26th, 2006 14:25
Hi there ladies - my son is 5 1/2 and we are blessed to have him after being told that his birth defect was not known alot about and the kids don’t live past a year!!! once we did our own research into cleft lip and palate (vs chromosome problems as the doctor stated) we realized how common and fixable it was. Any questions or contact or venting would be ok with me. Our son was quite big and handled 3 surgeries by the time he was 12 months old, ok. He has one large one left to fix the gum line - other wise he is “perfect”.
Holly
October 27th, 2006 12:38
Dear Karen - why isn’t another surgery in the future? he is almost a year so I was just curious as to why you said there are no near future operations for his for a while. Where do you guys live? Do you want to chat about it? It can be very frustrating - I hope you got some answers on feeding challenges since your last note in july. The first year for us was very stressful on me and the memory is still hard some times to handle so if you want to talk, let me know. hpuddle99@hotmail.com
holly
November 21st, 2006 21:13
Hi
My son Jayden is now 6 months old and also has a unilateral cleft lip and palate. He has had his first surgery at 4 months and has since started on solids. Initially I added his pureed veges and farex into his soft cup feeder and then gradually started with a spoon. I hope this technique may be of help.
December 28th, 2006 06:26
Hi my daughters name is Rania she is 13 weeks old, and is experiencing very bad reflux problems with her she is being bottlefed
she has a bi lateral cleft lip and her front gum is in tact due to this her weight is also decreasing she is now on ranitidine and we are waiting to see the paedetrician it does not help as she is a hungry baby, but finds feeding difficult I feel very alone and helpless as the so called specialists are not very helpful
I would be very grateful for any advice
January 10th, 2007 22:31
Hi everyone…..I am a mum in the early 20s, and My son, who will be 1 end of Jan, was born with an un-diagnosed bi-lateral cleft lip, and palate. We are very lucky, as his is not so bad. It didn’t affect his nose or anything, and he has so far not had any other problems (ear infections etc) He has had his lip surgery (what an awesome job, you almost can’t tell), and is due for the palate repair in three weeks… FOR KAREN ABOVE…I USED TO WRAP, FOR EXAMPLE, APPLES IN MUSLIN CLOTH AND LET MY BOY CHEW ON THAT, AS IT WOULD PUREE DOWN WHILE CHEWING, BUT NO BIG BITS WOULD CATCH IN HIS THROAT AND HE WAS STILL GETTING THE NUTRIENTS ETC. HE CAN CHEW THIS AT HIS OWN PACE, AND PULL IT OUT IF HE FEELS UNCOMFORTABLE. Also, try giving him a spoon to play with, chew etc, he may be more inclined to eat from it, once he knows the gist of it, but keep his food semi pureed still, as it’s obviously too hard for him to eat bigger foods.
I have found the best bottle I have used to date, is the pigeon feeder teats, as it actually makes him do the work, and he has been allowed to use this after surgery, so we havn’t had the stress of trying to change his feeding patterns etc. (talk to your S&L therapist if you don’t know about these teats) I am currently trying to wean him off the bottle, and one of the only trainer cups I have found that works, is the NUBY from TOMMEE TIPPEE. He has no problems with it. He again, has to do the work, which is good, because they dont get “lazy”
I also make “smoothies” out of his formula(1cup) and pureed fruit (1/2 cup) and feed it through the bottle. He loves it, and it gets down him! He has been really good at taking food, and now eats almost eveything we eat….although he is good at choking now and then!
TO THE ABOVE ANONYMOUS…. I know how hard and frustrating it can be sometimes, but you just need to persevere, and talk to every person possible…Friends, family, etc. If you feel it is taking too long to hear from paedetricians / doctors etc, just keep phoning. Ask as many questions as you need to, and don’t be afraid to ask for help/advice. Honestly…It does get easier. I don’t know where you live (in Auckland? ,in NZ?), but if you need to talk, you can always email me any questions or concerns. NICKIEY_R@HOTMAIL.COM.
Same with anyone out there! I also have alot of phone numbers of some really good, helpful people you could call if you ever need to.
Hope any of this helps anyone!
Nickiey.
March 31st, 2007 21:55
Hi, I have a three month old baby girl-Rebecca who was born with a cleft in her soft pallet.She is currently battling with reflux and I have her on Ranitidine which hasn’t really helped.I am also thickening expressed breastmilk with Karicare food thickener which has not really made a real difference either.She really needs to put on weight, is dropping below the 25%growth curve which she has followed up untill recently.I am very concerned as she needs to be of good weight for her operation at 6-9 months of age.Does anyone have any good advice as I am also at a loss as to what to do?
August 11th, 2007 20:02
Tammy, I hope things have picked up for you and Rebecca. You will be due your repair very soon. If you would like to talk to anyone, please give us at the Support Group a ring on 0800 425 338.
Reflux is a really tricky problem for all babies and parents who are trying to overcome it, there doesn’t seem to be any easy answers. My son didn’t have reflux, but many cleft babies do have reflux. We have collected some information from mums who have lived through this particular challenge and put them under the My Child heading - feeding - reflux section of the website. There are also some support groups set up specifically to offer information and support around this issue. The link is at the bottom of the feeding page.
Thanks for using this forum to get some information. The more people who contribute the more options we can look into as parents facing challenging issues. Thanks also to all those who have added their learnings from their personal experience. We can really help each other.
August 23rd, 2007 15:55
Hi I am 27 I was born with a cleft lip and palate my parents both struggled alot with this I was their first born and the doctor told my mum i would never speak and that I would have all sorts of other physical problems well suffice to say I never shut up and my health is perfect!!! So to all you mums and dads that are finding it tough hang in there we make it thru and sometimes the doctors do get it wrong blessings to you all, Alesha
November 21st, 2007 05:14
Hi, I have a 4 year old named Hailey who was born with a complete bilateral cleft lip and palate. She has had 4 surgeries so far, including the lip repair, to palate repairs, and a few other surgereies. In July of this year the dr tested her urine and found out she had a UTI. ever since then its been non stop antibiotics and utis left and right…the did a regular ultrasound and found nothing, but my daughter is still suffering from not being potty trained and the UTIs. I was wondering if other parents have found this in their Cleft children and if they have ever found an answer? I’m just starting to think her pediatrician is lazy.
November 21st, 2007 05:29
Alesha, the dr that delievered Hailey told me she would be way behind on everything…there were 2 other babies born in my family within 2 weeks of her..and she is far more ahead than the other 2 and has better speech than one of them.
March 18th, 2008 14:50
Hi, my name is Kelli. Im 28 years old I have a cleft palate and Lip. I have had 23 surgereies to date. Its very hard growing up with this. Kids can be very mean. So if I have any advice on this subject for parents its please make sure that your child feels like any other child in school. My parents were great but you cant get passed the anger that come with this defect. Now at 28 I have alot of self issues’s. Im married and have a great life but its not easy as a child. So if anyone wants to talk to about this please feel free to email me swaimk@msn.com
April 10th, 2008 09:02
hi,
i have a cleft lip and i will soon be having my 5th surgery at Shriners hospital in chicago. At first my mother took me to Loylola to my surgeries done. I had two there. They did not turn out well. that is way she took me to shriners when i was eleven. i enjoy shriners very much. i am now 19 and it is my dream to work as a nurse at shriners hospital.
May 11th, 2008 11:05
Hi everyone,
I have four kids. The two older girls had no indication of cleft but Gina, my third, had bilateral cleft lip and palate. To anyone who has problems with reflux and regurgitating, try goat formula. It has a very similar structure to human milk and doesn’t upset babies stomachs as much as cow milk formula. Always feed with your baby propped up in your arms, wind them well and hold them or cuddle them for a wee while, rather than lying them straight down. I had the end of her cot raised on telephone books to keep her head higher than her tummy (even when she was as old as two) and used a very small baby spoon to feed quite runny but nutritious foods. This was just so that she wasn’t having to cope with too much food in one go. Perservere, as cleft babies and kids are great lateral thinkers, Gina found ways of swishing the food around with her tongue. My main focus was always to keep her happy and well fed, even if that meant she relied on toddler formula more than solids until she had her palate surgery.
DON’T EVER FEEL PRESSURED TO KEEP UP WITH NON CLEFT BABY MILESTONES!!! YOUR BABY IS UNIQUE AND WILL THRIVE UNDER YOUR CARE, REGARDLESS OF WHETHER HE / SHE IS DOING THINGS AT THE SAME SPEED AS OTHER PEOPLES KIDS.
As a post script, my forth baby had a very slight cleft lip only, and breast fed like a pro right from the word go, but I was fully prepared to do for him what I had for Gina if he had a bigger cleft. I never considered for a moment that having another cleft baby was a ‘mistake’. I am expecting my fifth baby now and am quite prepared to greet another extra big smiler when this one comes. They are people first and foremost, the cleft bit will not define their lives forever. Regards, Cathy
June 10th, 2008 07:10
Hi,
To anyone who has gone through this before…I need some help! My son was born with a bilateral cleft lip and cleft palate. He is 7 months old. He will have a completel lip surgery when he is 8 months old. He eats from his bottle great, very chubby little boy. My question is this. After this next surgery, how do I start feeding him baby food? On a spoon like “normal” babies? And since he does have the cleft palate, is he able to have solid foods? The doctors are not really helpful, wish they were since I don’t know what to expect from a cleft baby. Thanks for the help!
June 16th, 2008 22:46
Hi stephanie, Ihave an 11 month old boy who was born with a severe cleft palate and pierre robin.We spent the first 3 months in nicu as he had extreme dificulty feeding and breathing on his own,the doctors,specialists etc told me we were going to have a really hard time introducing him to solids…4 months old we started him on farex from a spoon and it just happened naturally,i realize we were probably very lucky but i think its all about persevarence and also baby just finding their own way and what works for them,he went on to fruit and veges soon after that,we never looked back!My nurses told me not to make his food much runier than normal as its easier for them to grip with their tongue and “drag it down”.We”re still waiting to hear when he’ll go in for surgery but at the moment hes happy and even eating sandwiches and toast everyday…which we were told he definatey wouldnt be doing till after surgery!!!Its hard when your being told lots of different things by lots of different people,my doctors wernt helpful at all so i kinda took it upon myself to charge ahead.scary but it all worked out,i hope this has been some kind of help to you,goodluck for the up coming surgery!!!
June 18th, 2008 20:54
Hi there
My daughter has a unilateral cleft lip and palate. She ate solids well before her palate was repaired. We kept them soft - pureed fruit and veg, meat, and baby cereal, just like any baby. It wasnt that hard for her to swallow. We kept her off hard food so that it wouldnt be too difficult to stop her having them after surgery. She is nearly 4 and eats everything.
August 13th, 2008 13:01
Hi there, My name is chelsea and i’m a student at the university of canterbury studying early childhood teaching.
I have just began a course assignemnt on inclusive education, We have to choose a disability or impairement and create a programme that is “iINCLUSIVE for ALL CHILDREN INVOLVED.”
I have chosen cleft lip and palate as my ‘impairement’ and am going to build a portfolio that creates an inclusive environment for the children.
If there is any information you could give me that would help build an inclusive environment for children (especially including the child with a cleft lip & palate) it would be much appreciated.
Many thanks, Chelsea Murdoch
cmu34@student.canterbury.ac.nz is my email.
August 31st, 2008 16:35
Thank God for the Internet. My son is 6 months old and has a Cleft palatte (pierre robin). We travel 2 hours to a specialist team in Miami, but have spent the majority of the time solving our own problems throught trial and error and reading message boards such as this one. I am also having a terrible time with solids. My son just cries and cries. Most foods come up through his nose, but we can usually get a few bites of cereal in him. Fruits and veggies come right through his nose making him even angrier. Fruits are the worst. I just realized after reading another mother’s post here that the fruits probably hurt the most so I won’t force it. Thank you all so much for posting your experience and advice. it helpds to know that we are not alone and to see what works for others.
September 15th, 2008 14:46
My name is Julie-Anne. I was born with a unilateral cleft lip on the right side 31 years ago. I had my initial repair done at 3 months. This took 80 minutes and was done by Max Lovie at Hutt Hospital. He was a brilliant surgeon who died way before his time. I had a scar revision when i was almost 5, then two bone grafts- I think I was 9 and 12, but I can’t remember. the first bonegraft was unsuccessful; the second provided something for my eye-tooth to come down through. I had to endure LOTS of orthodontic work, most of which had to be done a 2 hour drive from my home. I am missing one tooth, and my right front tooth came through turned 90 degrees. Once they turned it, getting it to stay put was a challenge.
When I was 20 I had my last surgery. It was optional, but my nose was noticeable weird, so I had the rhinoplasty. It is not perfect but I don’t get comments, so I am content.
A word about what this is like for the child: The lack of control sucks- you get told you have to have this or that operation and you have to comply. Kids are (as we know) cruel. But those with clefts get about the same level of comments as the overweight or those with glasses. I was terribly self-conscious as a toddler, as I scar ‘wide and red’ (said Mr. Lovie) and I looked like I had been punched. Mum says I used to turn my back when anyone tried to talk to me. I don’t remember this, and the scar settled down to one of the least-noticeable repairs I have seen.
I was breast-fed, which went OK, except Mum kept getting infections as my sucking action wasn’t efficient. I ate OK, and talked early and never needed speech therapy. I have 3 siblings, none of which have any of my troubles. We only have one photo of me before my surgery and I don’t see it often. Every time I look at it I am surprised at how bad it was and I am grateful for the expertise of the staff at Hutt.
If your child has this problem, it is your job to be really assertive and think and ask questions of the medical staff. They are skilled but not perfect and they are busy. No one can care about the welfare of your child more than you do. The system will stuff you around just because it can. Your child is dealing with enough, without unthinking professionals adding to the stress. My mum is an assertive woman, and I learned to be the same when dealing with hospital and orthodontics staff. I am sure we got better outcomes because of it (and also some sense of having a little control, which was a big positive)
October 28th, 2008 06:23
My son Liam who is now 6 months was born with an undiagnosed cleft palate and with a Robbins sequence with severe GERD. It took my husband and I awhile to figure this all out but Childrens Hosp in Boston is amazing. Liam is now on Prevacid all the other GERD medicines like Ranitidine, worth looking into with your pediatrician. Liam is now eating wonderfully and onto solids which he is having the same out the nose experience, but i have found keeping the spoon in his mouth so he can lick the food off of it and push his tongue off has helped him to swallow a little better and then when all else fails I offer it in the bottle and now the Nubby cup…
Hope all you mothers and fathers out there are surviving and loving your little babies…. but I can not wait for the GERD to be gone, yikes!!!
November 5th, 2008 09:19
Hi everyone,
My is Merryn and I was born with an undiagnosed bilateral cleft lip and pallet. I am now 20 years of age and to date have had 10 operations. I am having my next one in two weeks, it is a double jaw surgery with a genoplasty. My mum never new I had this ‘deformity’ and it wasn’t until the doctor handed me to her that she found out. She had never heard of this and had no idea what to do. The nurses sent her home, she had no idea how to feed me. She was trying to breast feed me but because I had no soft pallet I could not suck, and I became severely dehydrated. The doctors told my mum that I would never be able to talk properly because a lot of children just like me are born with hearing problems. My mum spent a lot of time with me, teaching me to talk and taking me to speech pathologists. I also had to have gromits put in my ears. At 6 weeks I had my first operation, and I think that was to repair the pallet. My doctor is absolutely wonderful and he is by far the best, Dr Phillip Thompson, he works in Australia in the Childrens Hospital. My lip scars are barely visible and there is no puckering of the lip as he uses the old technique which creates a better result.
Good luck to all you mums, I wish you all the best.
A good poem to read is ‘Welcome to Holland’ it will cheer you up.
I am a healthy adult now and can hear and talk properly, at the moment I am studying at university.
If you have any questions or wish to contact me you can find me on facebook (Mezz webb) or on myspace (merryn webb).
hope this has given a peek at the light at the end of the tunnel.
November 20th, 2008 14:17
I have just had my 20wk scan done and have been told that my little girl has a cleft lip and palate. i am naturally worried about the extent of the problem and would like advice from anyone in relation to surgeries and costs. I already have one daughter and my husband and I have just bought a house, so we are struggling as it is and have not been told anything except “it can be fixed”. Any information is appreciated. Thanks