2 congenital birth defects

[jo]

Hi there

I am a mum of two from the UK - My fist daughter was born 13 years ago and was what I would describe as a *text book baby* - no probs, nice and easy

However, in that she lulled me into a false sence of security and hence we were blessed with our little bag of trouble four years ago In essence she is a bright, healthy loving child but had already had her fair share of problems.

She was born with a congenital birth defect called gastroschisis which means that in uetro her bowels developed on the outside of her body. She had her first operation at 2 hours old and was fully *closed* at 8 days. She spent 7 weeks in the NICU and other than a few bouts of constipation (which may or may not be related) has suffered no ill effects from the condition.

Two months ago, after a long haul to see an ENT for what we thought would be a *simple* case of glue ear needing grommets (Our GP said that her bifid uvula was *nothing to worry about* she was diagnosed with a submucosal cleft palate. She has seen the *Team* (who are wonderful) and the speech therapist who has recommended surgery due to her speech and we are awaiting a 2nd appointment with the surgeon and a surgery date.

I think I have just about managed to get my hed around things but am feeling more and more curious about a possible link! We have been referred to a geneticist to *take a look at her chromosomes* but this could take up to a year and to be honest I dont think that she actually has any syndrome. However, I dont yet seem to have come across anyone one else with both defects and was looking for a little more insight.

I believe that both defects occured at the same time (is cleft 4-8 week? and gastro is 7-11 gestation) although I suppose that can never be proven.

So, after my essay - lol - I suppose all I am asking is if anyone has ever come across a link between the two?

Thank you all in advance.
Much Love
Jo
x

[liv.j.smith]

Dear Jo

I'm Olivia (18 with a cleft lip and palate).

I'm pretty sure that you're born with a cleft palate - I don't think it occurs 4 weeks later

I had never heard of gastroschisis before you mentioned it - but I had a little look around on a few sites, and found this, which I hope helps to answer your question. It's quoted from:

http://www.idph.state.ia.us/genetics/ge ... orders.asp

And says...''Gastroschisis does not involve the umbilicus. The birth defect results from the protrusion of intestine and sometimes liver outside of the abdomen. This defect usually occurs to the right of the umbilicus and never includes a covering membrane. Infants with gastroschisis tend not to have other birth defects. Gastroschisis is not associated with chromosomal abnormalities.''

Also, this site http://www.widesmiles.org/cleftlinks/ might be useful - if not for answering your question, then perhaps in relation to your child's hearing difficulties etc.

Best of luck As my nan always told me, problems like this were meant to happen, and it will be made up for in other ways

[krista]

liv.j.smith.....


i think that you misunderstood what she was saying. she was refering to how many wks gestation you are when spacific birth defects happen. she was not talking about a cleft happening when a child is 4 wks old.


[quote] I believe that both defects occured at the same time (is cleft 4-8 week? and gastro is 7-11 gestation) although I suppose that can never be proven.

anyhow, just wanted to straighten that out . take care, krista

[liv.j.smith]

Ohh right i see Well hope the rest was helpful!

[heather]

I have had two previous children, a boy who is now almost 4 and a little girl who is almost 2. I am currently pregnant with my third child, another boy, who has been diagnosed with a unilateral cleft lip. We are uncertain about the palate. This is my second child that has been born with a birth defect. My oldest son was born with a congenital heart defect called aortic stenosis. His aortic valve calcifies (hardens) and closes, making it very difficult for blood to flow properly through his body. You really start to wonder if there's something that you are doing to make these things happen. Especially since these two cases are the only two that have ever occurred on either side of the family. I love my children but having to think about two of them going through multiple surgeries just breaks my heart. I feel so responsible.

[gc0447]

Dear Heather,

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.craniofacial.net & http://www.worldcf.org). How are you? Here are my Personal Story & Before and After picture links:

http://www.craniofacial.net/hypertelorism.htm (Anopthalmus with Frontonasal Dysplasia)
http://www.craniofacial.net/testimonials.htm (Georgette, Patient)
http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)
http://extratv.warnerbros.com/cmp/spotl ... 06_09a.htm
http://www.cleftadvocate.org/ff0104Georgette.html
http://www.cleftline.org/som/0507/som0507couval.htm
http://www.apert.org/couvall/index.html

You had said that you are expecting your third child to be born with a Cleft Deformity.

Dr. Salyer is my Craniofacial/Cleft Surgeon. I love him like I love my own family. He has not only made a medical miracle for me, but has done the same for many other Craniofacial and Cleft patients from all over the world. He is the best. Dr. Salyer is the director of the International Craniofacial Institute (http://www.craniofacial.net) & founder of the World Craniofacial Foundation (http://www.worldcf.org) in Dallas, Texas. Here are the links that show Before & After pictures of Dr. Salyer's patients with Cleft Deformities in which he has operated on:

http://www.craniofacial.net/cleft_lip_pictures.htm
http://www.worldcf.org/facial.cfm
http://www.worldcf.org/genetic_cleft.cfm
http://www.worldcf.org/bilateral_clefts.cfm
http://www.worldcf.org/unilateral_clefts.cfm

Please feel free to email me at georgettecouvall@hotmail.com if you need more information. (I sent you a private email with Dr. Salyer's information also). I wish the best for you and your family.

Sincerely,

Georgette Couvall