Aisling Muscular d. cleft lip and palate

[bmcelligott@tinet.ie]

We are very interested in your website as it is great to hear from both parents and people who have cleft lip and palate. We have tried to make contact before but have had no replies. Our daughter, Aisling (it means Dream, in Irish, as you may have gathered from our address, we are from Ireland.) Aisling has cleft lip and palate - Bilateral and missing all of her palate. In addition to this, she has Muscular Dystrophy and had very badly dislocated hips, thalipes (another name for deformed feet). Her neurologist has suggested that the problems might be related and we would be very interested in hearing from anyone who has come across a combination of cleft lip and palate with any of the above. We are spending our time dealing with the reality of these problems but would love to hear from anyone who had been through the same. We check this list regularly but feel free to reply personally at bmcelligott@tinet.ie.


By the way, has anyone on the list used the Hanen Programme? We have just started on it and would be very interested in hearing anyone's opinion on it.


Brendan McElligott.

[Calvero]

Hello . My name is Kim and I'm 26 and born with unilateral cleft lip and bilateral cleft palateed (both fixed when I was only a few months old), and Ireland is one of my ancestral homelands . I never knew that MD and cleft were related...maybe it might be connected due to the theory of it being caused by the lack of folic acid, since I've heard that it causes spinal bifida and other birth defects. My sister has a very slight case of that and I'm the only one in the whole family born cleft.


And when you say bilateral Cleft lip and palate, do you mean she had both bilateral cleft lip and cleft palate? From your description of there being no palate, that's called a bilateral cleft palate (unless I misunderstood something). If she has one hole under her nose it's unilateral cleft lip, but if there's two that's a bilateral cleft palate. We just had a chat about that last night in my Cleft Club and some were a little confused about the terms, so if you or anyone else is confused, that's quite alright everyone is at some point...


The only other problem I have is eye trouble (lazy eye and I have to wear glasses all the time). I have never heard of the Hanen Programme, so I can't help you any there .


You're more than welcome to read my story on the web at <a href="<a href="http://calvero.tripod.com/cleft/">http://calvero.tripod.com/cleft/</a>"> <a href="http://calvero.tripod.com/cleft/">http://calvero.tripod.com/cleft/</a> </a> and join The Cleft Club at <a href="<a href="http://clubs.yahoo.com/clubs/thecleftclub">http://clubs.yahoo.com/clubs/thecleftclub</a>"> <a href="http://clubs.yahoo.com/clubs/thecleftclub">http://clubs.yahoo.com/clubs/thecleftclub</a> </a> . It's not meant to be in compitition eith this board, it's just another place to share . You can also share photos and have live chats too.


Kim

[amgula]

Hi Brendan,
I am a 33 year old female who was born with a bilateral cleft lip and palate. I went through many, many corrective surgeries. Though I do not have any of the other conditions you are asking about, I was also born with a dislocated hip (hip displasia). I really don't know if there is a connection between this condition with the cleft one, but I think there may be. I thought you'd be interested in knowing this, and maybe this will be another detail to consider when finding associated conditions. I do know that the condition referred to as "clubbed foot" can sometimes be related to a cleft condition. If I can answer any other questions you might have, you may write me at amgula@sprynet.com Good luck to you and your family.