Clefting with No Family History

Kristi - posted on 05/15/2009 ( 23 moms have responded )

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Both my children were born with clefts. My daughter who is now 13 was born with a cleft lip. My son, now 11, was born with bilateral cleft lip & extensive cleft palate. We have no known family history.



Is there anyone else out there with more than one child affected without no family history. The only answers we ever received were "we don't know what to tell you" and that my 2 miscariages may have been related.

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Kristi - posted on 11/28/2012

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Hi Kristi~

My 23 month old son was born with a bilateral cleft lip. His palate was intact. They missed his lip on my 20 wk ultrasound and if I wasn't diagnosed with gestational diabetes at 31 weeks, I would've never known of his cleft till he was born. The tech saw it right away and asked me,' you know your baby is going to be born with a cleft lip, right??' AHHH, NO! I was 35 weeks a long at that time. What a shock!! The specialist came in and told me if I had any more children, my chances of having another with a cleft is greater. I was 34 and had 2 other children already...both with no clefts. We had been trying for almost a year to have him and I was taking my prenatal vit. everyday because we were trying to get pregnant. We have NO family history on either side. We did the genetic testing and they came up with nothing. We met with ENT surgeons and discussed when surgery would be and how we would proceed after he was born..both females. I had nursed both my previous children and wanted to 'try' to nurse him...they told me NOT to even try. She told me,' not only does it frustrate the Mom but it also frustrates the baby and the baby doesn't thrive.' I nursed him successfully for a year AND through his lip surgery with out any problems :) He was also above the 90% in height and weight till he was almost a year old. I'd also like to point out that the hospital I was at was the Mayo Clinic. We chose to NOT go through them for anything after he was born and chose Gillette Children's because their outlook and treatment was WAY better than Mayo's. (Thank you Dr Robert Wood.) These things just happen...I blamed myself for a long time and I know now that I did everything that I was suppose to do and he was just suppose to be born with a cleft lip...I honestly wouldn't have had him any other way!!!! Hugs to you all you cleft Mommies out there...I know we would trade spots with them if we could and it is just heartbreaking to watch them go through all they do. My son has taught me to be a better, stronger woman and for that, I thank him everyday!!!



Much luck to everyone, Kristi and Evan

Victoria - posted on 05/07/2013

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Hi. I am a mother of a 9 year old boy and a 6 year girl; both born with bilateral cleft lip and palate complete. We knew the diagnosis for both of them during the pregnancies. As far as I know, there is no family history on my side, nor my ex-husband's side. We were told there was only a 3-5% chance our daughter would be born with the same diagnosis. Apparently I should play the lottery. All jokes aside, the kids are doing well physically, mentally, emotionally, and spiritually. My son started a mission project last year for SmileTrain and raised enough money to pay for two surgeries. We meet with the cleft and craniofacial team of each year. We're always hopeful there will be new information about clefting. I could go on for days about all of the research I've done, questions asked, etc. The bottom line is only time will tell.

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Heather - posted on 02/02/2013

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Hi, my name is Heather Malsi and I also just had a baby with a cleft lip and a cleft palate, but no family history of this and my older girls were born without problems. I was worried at first when I found out, but according my doctors it just happens and there was nothing I could do about it. I did have miscariage, but that was years before I had my third child and I don't think that it anything do with her born with a cleft lip and a cleft palate.

My baby is now 3 months old and she is doing great and gaining wieght. I also live Klamath Falls, Oregon and not many doctors have seen a cleft lip or a cleft palate not alone a baby with both for many years. I was told when she was born that she was the first baby that both that was born at the hosiptal here in Klamath Falls and they had no idea what was going to happen when she was born. This worried me and it still does, but anyways we are going to be going up to Portland, Oregon to get her looked at for her lip surgery later this month.

Heather

Danielle - posted on 11/12/2012

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I was told at my 20 week ultra sound my baby had a cleft lip, they weren't sure about the palate. He was born with just the lip- I have no idea why it happened.. I don't care anymore (he is 8 now) I am just happy that in the grand scheme of things in life, this was the worst he got! He doesn't want another surgery, and I will do what he wants from here on out. He tells me he likes his lip the way it is. (he has had two surgeries)

Brandi - posted on 11/08/2012

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Both of my children were born with clefts. My daughter who is 11 was born with unilateral cleft lip and partial palate. My son who is now 9 was born bilateral cleft lip and palate. We have no known family history. My husband had a previous marriage and had two boys no clefts. I had a previous marriage and had a daughter and no clefting. Only clefting at all are our two children mentioned above together. We have been seen in indiana by cleft team and been through genetics for syndromes, and they found no syndromes. We now live in florida and cleft team here has no family as of yet but us that have no family history of clefting and have two children. I hear it is rare, or that is what we are told. I have never had a miscarriage . I have asked this same question that you are asking so many times .

Jackie - posted on 01/09/2011

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I'm in Kansas and we have a cleft lip/ pallet specialist within 3 hours of here. When we got custody of my stepdaughter I took her to see him. Hallie was born with both lip and pallet and we got her at 11 years old.
The specialist told me that the causes of clefting are unknown and that there is no genetic link whatsoever. He said that there is some testing going on and that some causes are starting to show but that theyre not 100% sure of the causes but getting close to finding out. We go back in September and if I find anything out I'll post it.

Pam - posted on 04/29/2010

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It ran in my family.Usually one in every generation my son had the cleft pallet but not the hair lip like my cousin and uncle who had both

Carrie - posted on 04/28/2010

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Hi,
There is no history on either side of our family. We have a 3 1/2 year old who was fine and we have a 4 month old that was born with cleft lip and his soft palate was affected also. It says that 1 in 600 babies are affected and it either genetic or it can also be enviromental, I have read that acne medications, perscription drugs can affect it and Teratogens(?) things in the enviroment. Patrick is awaiting surgery. They will do it when he is 6 months so sometime in June.

Timber - posted on 04/26/2010

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Did they do any genetic testing? my son has a xtra piece on his number 17 chromosome. and he has a bilateral cleft lip and palate. He is 2 months old

Kellean - posted on 04/08/2010

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My oldest son had the beginning of a partial cleft palate in his soft palate. My youngest son had a full cleft palate. The doctors warned that if we had another child it would have had both the cleft lip and palate. I want to add that this news wouldn't have changed our minds about having another, if I were able to.
There is no history in my family. I took my vitamins every day and took really good care of myself. No one on here should ever make you feel like it is something you did or did not do that caused this. No one knows, not even the doctors. Some things are still a mystery. You have a lot of supporters on here. Best wishes!

Brittany - posted on 03/24/2010

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Hi Kristi!!



I am expecting my first Child and Neither I nor My Boyfriend have any history of Clet Lip/ Palate. They sent us to a genetics specialist and all they came up with was that I had a lack of Folic Acid intake. They said sometimes that can be a cause but they aren't certain.



Hope all is well with your Children

Karen - posted on 03/22/2010

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we have an almost 3 yr old that was born with a cleft lip and palate. after lots of genetic testing and review of family hx and all the meds I took, we were left with no answer as to why. I guess I will always wonder. I did the folic acid for over a year before.

Victoria - posted on 02/26/2010

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i toke nothing while being pregnant not even panadol. and also hate only the best fresh food and stayed away from all the food not recommended when you are pregnant..

Diana - posted on 02/26/2010

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Were you consistent in taking maternity vitamins prescribed by your doctor during your pregnancy?

Marley - posted on 02/14/2010

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Hey there! I only have one son who was born with a cleft soft palate. We have no family history on either side of the family. I had doctors asking if i did drugs, if myself and my partner were related..?? neither of which were true. They told us it was just one of those things that has happened...?

Victoria - posted on 02/13/2010

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Hi Kristi, My daughter was born with a cleft palate and she is nearly 20 months. we also have no family history and when i asked why they thought this could of happened.... they said they cant put it down as anything but it could of been from me having the flu in the first 3 months or spotting. Sadly i blamed myself for not looking after myself better. They said sometimes when you have a had pregnancy and spotting its the baby telling you something is wrong but they couldn't pick anything up in the 9 u/s i had and the 2 internal u/s. They said my chances have increased from 1 in 20,000 to1 in 210.

SAMANTHA - posted on 02/12/2010

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WELL MY FIRST SON HAD CLEFT LIP BUT MY SECOND ONE DIDNT BUT YOUR CHANCE AT HAVING ANOTHER CHILD WITH IT INCREASES WHEN YOU HAVE ONE WITH IT ALLREADY.....MY SONS WAS AN ISOLATED CASE ALSO NO FAMILY HISTORY; THEY JUST DONT KNOW WHAT CAUSES IT YET....BUT THEY DO KNOW THAT ALL PEOPLE ON THIS EARTH HAVE THE SAME PERCENTAGE TO HAVE A CHILD WITH IT.... WE JUST HAPPEND TOO BE THAT PERCENTAGE THAT IT HAPPEND TO

Kristina - posted on 01/16/2010

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No family history of it here either, my daughter (now 2) had a cleft lip that was "repaired" at 6 months of age. I dont know about u but i dont like to hear they "repaired" her cuz to me she was never broken. She is due for one more surgery (if wanted) to repair where the stitch ripped out in the lip. We havent crossed that bridge yet cuz they wont even talk about it until she is school aged and knows how to be careful with the area. Best of luck!

Jean - posted on 11/05/2009

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there was no history in our families either. My son was in a 16 yr research program at the University of Iowa Hospitals and Clinics. At one point they said it might be caused by smoking; then aspirin...never had any definitive results. Care was fantastic, but we weren't any more enlightened than any of the rest of you. It just happens. The hospital team did want me to have my tubes tied or whatever so I wouldn't have anymore. They even set up an appointment w/o informing me; I was furious. We did not have any more, but I was flabbergasted that they would do that!

The drs. did say that the odds of having another cleft once one was in the family went from 1 in 15,000 to 1 in 275!

My daughter and son-in-law have two children, both born w/o clefts or downs --which is on his side of the family.

Thank goodness for Dr. Januz Bardach.

Billie Jo - posted on 09/12/2009

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i have only one child who has it..both mine and my husband dont have any family history of it... like im sure u have heard its just happends.. the best of luck

[deleted account]

Hey Kristi!

I have two daughters, one is 6 and the other one is 2. The 2 year old was born with cleft lip and palate and the only family history of a cleft lip is going way back on my husband's side, a grandfather way back had a cleft lip and my daughter's plastic surgeon told us there is no way the two could be connected since it's so far back in the family.

So, we had genetic testing done because she is far-sighted and wears glasses, and has aerotic stenosis (a heart condition that is no concern at all at this point, may never be) and she was born with unilateral cleft lip and palate.

The doctors thought it was a chromosome thing where she had too many or she was missing some, and it turns out she has the right amount and they have no medical reason for her to be born with the 4 things. I don't know if my info helps at all, but the way I see it, it happened somehow and for some reason, I really didn't think it was a genetic defect of any sort. It would be nice to know but at the same time it wouldn't help to know now anyways. They just told us to have plenty of ultrasounds if we were to have more children but we're not.

Sorry if this is no help to you but I remember being told "we don't know what to tell you" and then decided to have the genetic testing done.

Take care!

Amy

Denise - posted on 07/14/2009

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I have only had one child with a cleft lip/palate and we also didn't have any family history. The doctors also told us sometimes this just happens and they don't know why. It is hard when doctors can't tell you what caused this. Well I hope your children are doing well.

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