Antenatal Diagnosis
Text provided by Richard Davis, Insight Radiology
Antenatal diagnosis of cleft lip is very useful. For the expectant parents, it enables informed preparation before the baby is born, including surgical and feeding issues to be discussed, and a more positive delivery experience for the family. It can also be used to reassure parents who already have a child with cleft lip. Amniocentesis may be considered especially if the cleft is midline.
With careful scanning and high quality equipment, it is now possible to detect virtually all cleft lips at the 18-20 week anatomy scan. This is the best time to obtain a diagnosis. Occasionally cleft lip can be demonstrated as early as 12 weeks.
The most important factor in detection of cleft lip, is the skill of the Sonographer. Occasionally a small cleft, large patient or baby in a difficult position may result in non-detection, but this is rare. Cleft palate with intact lip is, however, difficult to detect antenatally. A small jaw in association with a cleft palate may be detected on ultrasound.
While cleft lip is still detected using conventional 2D ultrasound, the baby’s face can now also be imaged with ultrasound to produce a 3-dimensional (3D) picture. This is very useful to further delineate the lip and face, providing useful images for patient and clinician. It can also be used to reassure parents who already have a child with cleft lip. Some advanced ultrasound machines enable 3D images to be produced in real-time, showing the baby moving, including lips and tongue. This is called 4D (3D plus time), and provides an enhanced 3D image. Due to the increased equipment costs and longer scan time involved with 4D scanning, generally there is an additional charge for this service.
The Sonographer should communicate results with the patient and also directly to the Midwife or Doctor. Some Sonographers can provide information about specialist cleft team referral, and amniocentesis issues, otherwise your Lead Maternity Carer will do the referral to the local cleft team.
Contact the Support Group on 0800 4 CLEFT (0800 425 338) for recommended Radiographers in your area. (New Zealand only)
July 22nd, 2006 04:31
I am a 19 year old female and I was born with a very mild form of cleft lip. My mother was told that any children that I may have wil definitely have cleft lip/palates, I was wondering if that was true. Will my children DEFINITELY have it, is there a better chance of them having it, are there any extra risk factors? If you have any information on what the chances are of me passing this birth defect on to my children, I would appreciate a response as soon as possible.
Thank You.
Devin Davis
August 6th, 2006 12:13
Hi Devin,
Genetic inheritance is quite a complex area. For most people with cleft that have no known family members that also have the condition you have inherited it because of a range of factors. This is called “multifactorial inheritance” The Support Group had an excellent speaker talk to families on this subject and his notes are posted in the forum. Salim Aftimos is a Paediatrician at Starship Hospital in Auckland NZ and he specialises in genetics. Take a look at the speech notes and it explains what multifactorial inheritance means.
The best way to get more definitive information on your particular chances of passing on a cleft to any offspring, would be to get a referral to a Geneticist. If you live in New Zealand it is preferable to get a referral to a Geneticist through your GP.
It is a very personal decision when you are thinking of planning a family how you assess the risk factors and how you feel about your ability to cope with supporting a baby/child through a cleft journey. We all see this very differently. As you would know, even though you have a cleft, it is only a small portion of the person that you are. We do not choose to have a cleft or a child with one, but we can choose how we respond to it.
Good luck Devin
Regards
Susan
October 16th, 2006 21:13
Hi Devin,
I myself was born with a right sided cleft lip & palate. I was referred to the genetics department of my local hospital where they looked at several things to determine wether mine was genetic or an isolated case in my family. My mum or dad canot remember anyone in there families with a cleft so we assume i’m the only one therefore they ruled out genetics! I Have a little girl who is 4 now & absolutly gorgeous so much so she is a child model!!! I didnt pass the cleft on & the hospital reassured me that i had a 97% chance of my children not having clefts which apparently is the same for people born without one! Im pregnant now with my 2nd child & although im still a little worried im sure everything will be fine. Dont let the cleft keep you from having children or enjoying a pregnancy but when you do get pregnant ask for a referral to a genetics dept.
Best wishes
Sharon
January 10th, 2007 22:48
Hi Everyone!
I’m glad to have seen the above Q&A. I was not born with a cleft lip / palate, and there is no history of it in either mine, or my husbands family, but our son was born nearly a year ago, with a bi lateral cleft lip and palate(not too bad though). The above info is really good, but I do wonder wether his children will have the same? And also, what are my chances of having more children with cleft palates / lips? Does it cost to see a geneticist? If anyone can clarify for me, as it is probably the only thing still unanswered. As for Devan above, and any one else in the same position… Don’t not have children because they could be born with cleft(s). They are such beautiful, wonderful babies / children / adults (as im sure you are too!) And the surgery etc these days are so much more advanced, you can almost not even see my son had a cleft lip (he has palate surgery in 3 weeks) Even though alot of cleft children can be disadvantaged with alot of things, you don’t love them any less, in fact they are loved even more I say!
Thanks. Nix.
January 10th, 2007 22:50
P.s. My son’s cleft was un-diagnosed in pregnancy, and I feel it is one thing they should do better checks for in pregnancy, as it is so common these days.
March 14th, 2007 18:50
Diagnosis of clefts prenatally is becoming more common. It is harder though to pick up on clefts of the soft palate. As technology improves in can only get better. Which means that it will become more important to ensure radiologists know where to refer families if they do get a diagnosis of a cleft. This is something that is both the cleft clinic’s responsibility and the Support Groups. It is a work in progress.
Nickie, Generally you can ask at your cleft clinic meeting if you are able to be referred to a geneticist. If they believe there is a need for a referral then it will be free - but you often have to wait quite some time. The other option is to pay and be seen quicker.
You are right, cleft children, babies and adults are lovely, it is not a reason not to have a child. But I can also understand how you can have reservations. It is a very personal choice, and it depends on the family, other children, what other comitments you have.
What we don’t want is for people who get a diagnosis prenatally to make a quick decision, without getting the full facts about how clefts can be repaired. Another very important reason for the Support Group to ensure that radiologists know of the Support Group and the specialist teams who can assist families at that time.
October 31st, 2007 16:32
Nickiey,
We found out at our 20 week scan that our wee boy was going to be born with a Cleft Lip ?Pallet.
I think for us it was good to know in advance, as we have already attended a Cleft Clinic, and have numerous scans with Richard (wrote the above article), as well as meet with Lactation consults at the hospital where he will be born.
I do agree that it should be one of the things that they check routinely during the scans, however i can see how it could be quite difficult - further scans our boy had his hands covering his cleft.
Clefts also dont run in our family, but i wouldnt change our wee boy for the world. He is just so much more special to us because of the cleft.
Hope your sons surgery went well in January and that all is well.
November 9th, 2007 21:27
Hi my name is Monique Peihopa
I also found out that my son Kazin had a unilateral cleft lip/palate at my 20 week scan back in 2003. This was my second preganancy and I already had a 10 month old non-cleft daughter when I found out I was expecting a cleft baby on the way. It helped my partner and I prepare emotionally and research (internet/books) everything that we needed to know to be ready for the arrival of our special little boy. It gave us time to educate our family and close friends before he was born about cleft lip/palate. I will not lie having a cleft child can be hard work at times but at the end of the day I wouldn’t have it any other way this helps build character and learn so much.
My partner and I have been told there is a possibility we could have another cleft child but we do not mind at all and we will keep having children with clefts or not because they are still beautiful. The surgery is so good now that even adults are surprised when I tell them my son was born with a wide cleft lip and palate.
Best of luck for all the families out there who are experiencing or yet to experience the true blessing of raising a cleft lip and palate baby.
March 3rd, 2008 05:10
hello
i have clift lip and palate i was wondering is this gona affect my future baby? right now i have 1 daughter she is fine nothing like me but i do have the concern i want to get pregnant but im not sure if i will end up getting a baby with this problem is this more commen in boys?plz get back to me soon thanks for ur help
April 20th, 2008 08:43
My mom was born with cleft lip/palate, and had two kids without it!! So jut because you have it doesnt mean your child will.
April 28th, 2008 04:20
Hello
I was diagnosised by ultrasound at 20weeks that my son has a cleft lip, then they did a detailed ultrasound and found out it is a bilateral cleft lip and palate that was hard to handle. This is coming to be my 5th child and a boy and our last and this bombshell happens. I thought I did everything right. They are unable to see how severe the bilateral cleft lip or palate is until he is born but the only thing they can tell me is that the lip the biggest cleft is 6mm. measured. About bottle feeding any suggestions on the bottles that are good to use? Also at what age is the surgery for the lip and palate are usually done? Please your reponse would be apprecated asap I am due this July 2008.
Thanks,
Nancy
May 8th, 2008 20:10
Hi Nancy
Finding out your baby has a cleft is such a shock. It was my third and last child who had it. I didnt even really know what it was. Ny daughter has a unilateral cleft lip and palate and she fed well from a haberman feeder, but that was three and a half years ago and there are different bottles around now. My best advice is to talk to the cleft team who will be doing your babies surgery and they will let you know what they think is the best. It depends where you are as to what age they do surgeries. In New Zealand it is about 3-5 months for lips and 9-12 months for palate. Other countries can be different so again check in with your local clinic.
Hope this helps
Barbara
June 10th, 2008 01:29
hi nancy
My first baby girl is due in oct 2008.I also was told on my 20wk scan that she had bilateral cleft and palate. No family history of clefts we were devastated we are due for a 4d scan this wk. hope all goes well in july and maybe you could give us some tips for the future.
many thanks carrie.
July 1st, 2008 10:37
Hi there
I am due to have my second child in October and have just been given the bombshell that it has a cleft lip (at least).
We also have no family history of clefts.
I was woundering if anyone one was in the Wanganui/Palmerston North area as I need to talk to someone I find it very hard to talk to family so someone who has experienced it would be better I think.
Thank Lynley
July 1st, 2008 11:51
Hi Lynley,
It is a real bombshell when you first find out. Shock that this has happened and that the future you have in your head will be a bit different. For many of us there is no family history, which makes it all the more difficult to understand. The Support Group believes like yourself that talking and sharing our experiences is really useful. Please give us a call so we can talk. Toll free 0800 425 338. We are here to offer you some emotional support and information at this time.
Looking forward to hearing from you soon.
Regards, Susan Frear