Cleft lip/palate & other midline birth defects

[Jenny - Mother of Ryan]

Our son has a cleft unilateral lip and cleft soft palate. He also has a partial hypospadius (on the penis) and possible kidney trouble. I was wondering if there was anyone else out there who had a child with multiple birth defects of the midline. The doctor says they can all be related, which worries me that there may be more that are simply undetected at this point. Any one else going through this or been through this - help!

[Lucas' mama (jewelg1@vist]

Hi! I do not have experience with this personally, but am on another list which does have members with children who have multiple midline defects. Email me privately and I will tell you more about it, if you wish.

[Chrissy mother of Alix]

Okay this may sound wierd but, my daughter Alix who is 5, has a cleft lip and palate. but whats wierd is that her genetic doctors said the almost all cleft babies have a deep dimple on their bottom right in the center. Some even need surgeries to close it up. (Alix's dimple did not need surgery.) Another thing is that Alix has stomach problems. Her stomach hurts her alot and she seems to have problems going to the bathroom (bowl movements) I am just wondering if this could have something to do with a midline birth defect that we may not be aware of??? Please email me with any info catecroft@prodigy.net

[meesaz@aol.com]

Just read your note about your son. My son also had
hypospadius. He had surgery when he was 2 and all went
well. Now he is 20 and I guess things are just fine.
Doesn't discuss things much anymore. Mister macho
guy now.


But the interesting thing was my dad had the cleft palate
lip. So far this was not passed down to myself or my
children but we have no grandchildren as yet. I'm
wondering about the heredity part. Have they made
significant progress to track this?

[Raviv lerner]

Hi!
my name is raviv lerner, and 22 years old.
i have born with cleft lip and palate in one side.
i also born with multiplile other problems just like : Hearing Lost in both ears, easy back problem, and i'm also very thin 48KG only!
which is not for normal man like me , i should be
75KG,so all i wanted to say is take care about your child healty, go and check his problems with major doctors which know about his problem and way for souloution it.
for more information: r1977@internet-zahav.net
hope to hear from any body that might have problem and want some information.


From your friend : Raviv lerner from israel

[Jenny - Mother of Ryan]

I think it is always better to be extra cautious rather than simply writing it off as nothing. Now, yet again I doubt that your child would need extensive tests on everything. We were lucky enough to have a pediatrician who had Ryan tested for all major problems right at birth. He had a cat scan, ultrasound on his kidneys, heart test, etc. If you feel something may be wrong or related to the cleft - ask, and if you are not satisfied get another opionion. We know our children best and want the best for them. Medical advances today make so many health problems correctable and our children do fine when things are detected early.


e-mail me personally at mikegago@etv.net if you would like to respond more!


Jenny - mother of Ryan (unilateral cleft lip and palate - 2 months old)

[SueStudio@familytreemail.]

I have a ten year old son with a bilateral cleft palate and a three year daughter with a congential diaphragmatic hernia(meaning she had a hole in her diaphram)From what I've read the diaphram forms much the same way the palate does. CDH is much more serious than a cleft palate. The hole allows the intestines to come into the chest cavity when the devlopment of the lungs is taking place. Extreme lifesaving measures must take place at birth for CDH babies to live. I have read about CDH babies who also have cleft palates. There is support group online<<www.cherubs-cdh.org>> I thought this might be of interest to you.SueStudio@familytreemail.com

[Anonymous]

You may wish to visit this website: www.emedicine.com/ped/topic2805.htm