Expecting Baby Girl with Cleft Lip

[Leslie]

Hi,


I am new to this discussion list but have already read many remarkable stories that have inspired and reassured me. After thirteen years of marriage and several miscarriages, my husband and I are pregnant with our first child. We finally felt triumphant at making it through the first trimester, only to find out this week at our 18-week ultrasound that our baby girl will have a cleft lip and possible cleft palate. We were also told that the ultrasound showed some potential problems with the fluid membranes in the brain and one of the chamber walls of the heart, but that it was too early to tell about these. On top of that, we were told that the pattern of these three problems together may mean that something more serious is going on, like a neurological or chromosonal disorder such as Down's. We were given no other information and were sent on our merry way to deal with this news. Needless to say, we've been basket cases ever since. We won't have a follow-up ultrasound and genetic counseling for another three weeks. Amnio is a possibility for testing for the chromosonal disorders, but my OB/GYN is advising against this due to my past history with miscarriage. I'm wondering if anyone else out there has had a child diagnosed with similar problems, and if they were ultimately related to some type of neurological or chromosonal disorder. We are starting to come to grips with the cleft lip and know that that is repairable. But we are very worried and scared about the other possible problems that showed up on the ultrasound. If anyone has a similar experience, we would love to hear from you.

[Anonymous]

Hi, you may want to join this club and post the same questions you have. It's for parents of clefted children, and they should be able to give you an idea about testing, different syndromes, caring for clefted babies, etc.


<a href="http://clubs.yahoo.com/clubs/cleftkids">http://clubs.yahoo.com/clubs/cleftkids</a>


This is another site for clefts, with a separate parents section:


<a href="http://www.cleft.net/ss.html">http://www.cleft.net/ss.html</a>


Good luck and take care.

[Calvero]

My parents went through something similar when I came into the world... they had lost their first child, a son, due to a miscarriage. When I came they were somewhat relieved that I only had a cleft lip and palate and nothing life threatening. I did have some other problems, lazy eye and nearsighted, and also a double uterus (affected my own pregnancy), but not in the same range as what you might be facing.


I was told the same thing about the amnio test when I was pregnant due to me having the rare uterus condition... my ob/gyn didn't want the chance of something going wrong with me already being on the borderline of a high risk pregnancy (I did carry it full term with a heathy, non-cleft girl ).


I have also heard about connetions between cleft lip/palate and Down's but I don't know of many who have both. I have found some pages that have info on cleft related syndromes that might be of some use:


<a href="http://www.cleft.ie/related/">http://www.cleft.ie/related/</a>


<a href="http://www.widesmiles.org/cleftlinks/genetic.html">http://www.widesmiles.org/cleftlinks/genetic.html</a>


<a href="http://www.familyspotlight.com/cdscleft/Syndromes.htm">http://www.familyspotlight.com/cdscleft/Syndromes.htm</a>


<a href="http://www.ibis-birthdefects.org/start/cleffact.htm">http://www.ibis-birthdefects.org/start/cleffact.htm</a>


You are lucky in that you know about this ahead of time and can make some preparations (emotionally and finacially) . Best of luck with the rest of the pregnancy!


Kim
The Cleft Club
<a href="http://cleftclub.cjb.net">http://cleftclub.cjb.net</a>

[Anonymous]

Dear Leslie,
I read your comments and know exactly what you are going through. I am a craniofacial surgeon who deals with clefts every day. I am in practice with Dr. Magee and together we have helped thousands of kids with clefts, many of whom had complex cardiac, pulmonary and neurological problems.
We believe strongly that clefts should be repaired early in life if there are no other medical problems. I'm sure you have seen our patients stories and have heard from them on the internet. Please feel free to call me or email me directly and I'll give you any advice or help that I can. I'm sure i will also know a surgeon in your area that can speak to you in the next week or so.
My email is rsrosenblum@hotmail.com and my phone is 757 627 6700 (O) or 757 423 2938 (H). Please call me at either. Good Luck!
Sincerely,
Richard

[Patti]

Hi my son was born with a bilateral cleft lip and palate, he is now three years old. I'm sorry for what you are going through. Although my son was born with only a cleft I can understand what you are going through. What helped me was that I found a support group on the internet.The people there are really great, I have found much support and advice. If you like feel free to email me and i will try and send the link to you.Take care and hope to hear from you soon.My email is Patyee17@aol.com. Feel free to ask any questions.

[Bill Magee]

Leslie, I have been in pracyice now for over 22 years and have seen many variations of children born with Clefting. The good news is that the overwhelming number of these children do very well. If you need someone to talk to about this please call our office at 757-627-6700 and we would be more that glad to answer any of your questiions.I have taken care of over 3000 children with clefts so there just are not that many surprises that come along. We could also give you the phone # of wonderful families who can help you wtih this difficult time. Please don't hesitate to lean on us a bit. Dr. Magee

[stephanie ldarnell92@hotm]

Hello, I am sorry to hear about the hard time you are having right now, I am 21 years old , I delivered my 1st baby when I was 19 and she was born with a cleft lip and palate, and a big surprise,Down Syndrome. She is a very smart child, she has had 2 surgeries on her lip and palate, in which was a great repair, that was done by Dr. Magee in Norfolk. I seen that he has wrote you! He is a wonderful dr. and will set your mind at ease! My daughter had her 1st surgery at 3 weeks old. He repaired her lip and palate at the same time, and it was great. We found out about the Down Syndrome when she was about 3 days old, it was a shock, but remember they are sent to you for a reason, that is what kept me going! My daughter just had open-heart surgery and the next day she was jumping on the bed!!!AMAZING!!!! So I guess your in for a long and emotional road, but just think of how long you have wanted this! feel free to email me...God Bless

[Anonymous]

My husband and I were also given the news about cleft lip and possible cleft palate of our son at our ultrasound (26wks.). The doctors really downplayed it like it was no big deal but of course we were shocked and left with many questions, fears and worries. It's been about six weeks now and we just had another ultrasound today with no real developments as far as finding out if anything else is wrong or determining how severe the cleft is. I am not sure when you wrote this note, but if you want to email me with how your situation is going I'd love to hear from someone in a similar circumstance.
averagemom4@juno.com