I am in need of some advice. My daugther who is now 1 was born with complete FH in her right leg (which was amputated at the ankle in maybe because her foot couldn't be saved) and her left leg has both a fibula and tibia, but her foot only has 3 bones in it and 3 toes (4 if you count the fused bones). My question involves the causes of FH. My doctor at the shriners told me not to worry it isn't genetic but doctors at my local hospital keep taking blood test telling me it is genetic because it affects both feet. At at really confused because now we both really want more kids and having another child with FH wouldn't bother me but doctors keep telling me it could be a syndrome that could lead to much worst and maybe my daugther is lucky just to have FH... I have heard people talk about flying in the first 3 months or a very hard blow to the stomach could cause blood clots which could cause this (and I did both right around the critical foot growth period)...I am really at a loss at who to believe...Any help or advice would greatly be appreciated!!
Thanks in advance!
Connections » General Discussion » Fibular Hemimelia
Causes???
(6 posts)
Total votes:
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Lison
MemberPosted 4 years ago # -
Shennie
MemberI would suggest that you contact a geneticist. This is a doctor who specializes in genetics. They will do a full evaluation of your child and be able to tell you if the condition is genetic or not. This type of doctor is often found at major research or university type hospitals. You could probably get a referral for one from your physician.
My son was born missing most of his right hand. His pediatrician was pretty sure it was not genetic but suggested we consult a geneticist for our own piece of mind. At the genetics clinic, they took a very thorough family history. They then did a physical exam of our son and also examined the hands and feet of both me and my husband. At the conclusion of everything he told us that there was no indication that the condition was genetic and that our chances of having another child with the same condition were the same as anyone else. He also referred us to a hand specialist for further evaluation for possible corrective surgery. I would contact Shriner's again for referral to a geneticist if you can't get one from your regular doctor.
Posted 4 years ago # -
Lison
MemberThanks...That is what we did, after seeing the geneticist here, I contacted the Shriners and they refered me to yet another geneticist who has a big prenatal departement and who specialize in children!
Posted 4 years ago # -
scknotts
MemberLison,
Sorry I'm late to the game here.
Fibular Hemimelia is not inherited. It's a complete 'anomoly' that just happens. We went through the genetecist route and it was a BIG waste of time. My son is 7 with FH of the Left Leg. In all of my conversations, years on this site and more... only once have I heard of this occurring in more than one child. In that case, there was a VERY good reason. Thalidamide, if I recall.
You can talk to the Genetecist, but they will likely not be able to tell you much. I have never heard that this is inherited and our doctor flat out told us, you have the same chance of having it the second time... like anything else, which is about 1/100,00 for FH.
BTW... our son is an amputee as well, does awesome. In football right now, baseball in spring, he's going to start Karate, etc. No worries, normal kid.
Just my thoughts,
Stephen Knotts
scknotts@yahoo.comPosted 4 years ago # -
My son is currently having his leg lengthened for fh for the 2nd time. He will be 6 in august and we were told my a geneticist at NYU that it was most likely a random genetic mutation but we still had a 25 % chance of having a child with a limb defect if the genetic mutation was in my egg or my husbands sperm. If the mutation ocured when Nicholas was just a bunch of cells splitting then our chance would be 0.
We have had 2 children since with no birth defects.
FH is genetic in that it is caused a genetic mutation but it is not necessarily hereditary... the question I have is will our kids pass it on to their kids. Could not bear to ask this one all those years ago. But if their genetic code has this in it. Wouldn't they?
Posted 3 years ago # -
capeKO71
MemberMy son is 6 and has FH. I did worry a lot at first because he was my oldest, and we wanted more children.
I think the "causes" of it are generally pretty random (unless something like major radiation was involved or other physical cause). I did do a bit of research on the subject, and there was a statistically significant correlation to having a bicornate uterus and babies with limb deficiencies. I do have the bicornate uterus ("heart shaped"), but the chance increase by like 1%... it's not a huge risk. I forgot where I found the study... it was online somewhere.
We did go on to have a perfectly healthy baby after that - without any limb deficiencies...
Posted 3 years ago #
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