Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

To have children and pass down a genetic disorder?

182 replies

killagorilla · 14/08/2012 20:39

I have Factor V Leiden, it's a blood clotting disorder and is passed down from parent to child. I have it as does my siblings and every family member on my maternal grandfather's side.
It is quite a serious disorder and I have had one blood clot in my lung, all my family are on a low dosage of warfarin/heparin/aspirin to minimise the chances of blood clots.
I have 2 kids and they both have it as well. I was with a friend from university today and her kids and she was asking about it. When she found out that it is passed down from parent to child she got a bit shitty with me.
She said that she would never have kids knowing that they would have it and it could mean injecting yourself regularly and not being able to live a normal life.

I've been thinking about it and now I feel a bit Sad because I look at my kids and can't imagine life without them. But maybe I was selfish to have children knowing they would have something that has caused me so many health problems.

What do you guys think?

OP posts:
MsNobodyAgain · 17/08/2012 22:08

bumperalla Are you a geneticist? An expert in this type of thing? Do you have DCs with SN?

I would love to know that before I answer.

julienoshoes · 17/08/2012 22:32

I haven't read the whole thread I confess, but we have six children (three are my step children) DH has Antithrombin Deficiency another serious blood clotting condition. He hadn't been diagnosed when he had the children.
Five out of the six of them have inherited it. It has nearly killed my husband and his sister on a number of occasions. They both have countless blood clots in their lungs and legs. Their brother died of a blood clot in the lungs and heart.
My Stepson has had loads in his lungs, one of my step daughters had a massive clot that damn near reached her heart. Now we all know the situation, and they are all under the same consultant in a specialist centre for this condition, it is all about managing the condition, and the outcomes are so much brighter.
I do worry about them, but education about the condition is the key. They can make informed choices about how to live their lives.

Our three also have dyslexia/dysgraphia and dyspraxia. One has ADHD. All inherited from me and my family and causing so many problems that we had to remove them from school and home educate them.

One of them was yesterday diagnosed with Joint Hypermobility Syndrome, which causes her extreme pain and many difficulties. Again, it looks like she has inherited it from me and my family

The off spring who doesn't have the blood clotting disorder, was born with a congenital abnormality called Gastroschesis. Not inherited, but could possibly be caused by something I did in pregnancy. I have no idea what, but he is the one I feel guilty about.
The rest I am determined to aid them in living their lives to their full potential.

None of them have chosen to not have children because of any of the problems-which says it all really doesn't it?

ethelb · 17/08/2012 23:01

I studied genetics and bumperella is right.

It is 50/50 in most cases if one parent has the gene. Unless it is sex linked of course. Like Huntingtons.

Plus, factor V is an either or gene, things like BRACA mean you have a 50% chance of getting the gene and then a 50% chance if you do get it.

Gernally behavioural genes have far less statistical weight (seeing s you asked about SN) though obviously genes that culd lead to physical disabilit are better understood.

ethelb · 17/08/2012 23:03

sorry, ** 50% chance of BREAST CANCER if you do get it.

sudaname · 19/08/2012 15:34

Yes Bumperalla and others hacve a point. My DGD is as l post dancing to Just Dance and having an absolute ball - she is 12. The life expectancy of CF has gone up into the thirties now l believe and many are living into their 50s apparently, you wouldnt know there was anything wrong with her as a casual observer. She definitely has a near 'normal' good quality of life, apart from having to take her Creons (sp?) whenever she eats anything containing fat and having to have physio which even that is now a session on her trampoline which most 'normal' kids enjoy doing anyway. But it is still a horrible condition and a bit of a black cloud hanging over the family (her cousin died at 20 from it about 10 years ago) so we cant play it down too much but l agree there are many more what you would call seriously debilitating conditions out there.

sudaname · 19/08/2012 15:42

I know what l meant to ask you clever lot aswell. There is a lhigh incidence of unexplained deafness in the family from birth, but interestingly not the children who have full blown CF. Or in one instance , one parent a carrier one not , but their child was born deaf.

Have we all just got dodgy genes and it's just coincidence - another genetic fault , or could it be the CF gene manifesting itself in other ways iyswim.

CreativeAccounting · 05/07/2025 08:48

I have a condition which my daughter has a fifty percent chance of inheriting. When I became pregnant I did not really understand the implications of the disease. and I remained healthy until my mid fifties - since then have experienced serious health issues. I have agonised in the last few years about the possibility that my daughter might have inherited the condition- she is healthy and has not been tested for it. I pray that she is unaffected but I have made sure that she is informed and that she knows what her options are in the future if she is affected, particularly with regards to having children herself. The options include pre implantation genetic testing for the condition and subsequent IVF. But whatever she does, it will be her decision.

New posts on this thread. Refresh page
Swipe left for the next trending thread