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Hi

I wasn't sure where this shoudl go, I hope this is the right place.

I was hoping to egg share, but have found out I'm a CF carrier, so this is no longer an option for us.  Our clinic advised that we go back to our GP and get referred to a specialist and have DH tested to find out whether he is a carrier before we go any further.  Obviously this is the sensible thing to do, but it had taken us so very long to get to where we were (days before starting DR) that this is a very frustrating.

My question is, does anyone know what will happen if DH is also a carrier? the doctors keep telling me this is very unlikley, but I have to understand what were dealing with here.  As IVF is my only option I beginning to worry that we may be denied treatment completely if DH is also a carrier.  Whetehr to pursue having a family or not under thsoe circumstances would be a hard decision for anyone to make I'm sure ... but I would quite like it to be our decision iykwim.

Thanks xx
 

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Hi Brownie,

              I to am waiting for my CF test to come back to check if i am a carrier to be sure whether i can share. I have been told by my GP that if i was a carrier & DP was also then there is a very very high chance that the baby would be born with CF whereas if he is NOT a carrier then there will be a chance that the baby will also be a carrier... (it could be that it defo will be i cannot remember) All you need to worry about is if your DH is a carrier of which then you will need to make the decision about what to do next...

My Gp has told me the CF test will take approx 2-6 weeks to come back i've been waiting 4 weeks now & it still has not come back and my GP has very quick with all the other test so i would say to allow at LEAST 4 weeks for it to come back.

Have you checked at other clinic's to see if they will still let you share? I have read a few posts on the forum that some do let you. There was a lady a week or 2 but her receiptant was given the choice and her DH was tested negative so they proceeded.

All the best for the rest of your journey.

x ^reiki^
 

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If you are both carries there is a chance that yuor child will have CF.

I knew quite a few CF's and they have siblings who do not have it.

I think if one of you is a carrier and hubby is not it just means that the carrier gene gets carried down.

I think that is correct.
 

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You'd be able to do IVF with PGD, if necessary, to select the embryos that do not carry CF...

xx
 

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Hi Brownie,

Firstly - I would definately recommend you hold off your treatment cycle until you have your dh tested, that way you can then decide what treatment you do go ahead with... i.e. worse case scenario he is a carrier as well, in which there would be the option of doing PGD with IVF as Drownedgirl has just suggested.

Approximately 1 in 20 people are carriers of the CF Gene, so reverse that and 19 out of 20 aren't carriers, so your dh will probably be fine, but it's good to know what you're dealing with.  Both parents do have to be carriers to have a child with CF and if they do both carry the gene, then there is a 1 in 4 chance having a child with CF.  My dh actually has CF, but his older brother isn't and his younger brother is his half brother, so he doens't have it.

I was tested prior to having ICSI to see if I was a carrier and I came back clear (based on the fact that they can only test for about 90% of the different strains).  So as long as I wasn't a carrier of one of the 10% they can't check for yet, there was no way our son could have CF.  With my dh having CF though, my son is definately a carrier.

For the sake of a few more weeks, I personally wouldn't recommend you carry on with DR this cycle and get everything clear.  CF is an awful illness for which there is no cure and as there are ways around avoiding bring a child into the world with CF, then I would say that is definately the better way to go. 

If you require any further info please let me know, or apologies if I have bombarded you!

Wishing you all the very best with your future treatment.

Sue xxx

 

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Hi

My dh has a couple of CF genes so he has borderline CF which has resulted in him having azoospermia. I'm not a carrier but our child will definately be a carrier!!

I'm sure your dh will be fine

Good luck with your journey ^hugme^

                                  Jools x
 

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Hi
Hope I can help here.
WE found out DH is a CF carrier the day we had our BFP!!! THe clinic had lost his results and they arrived that day!
Basically the maths are as follows (bear with me as it gets complicatred but I found it helpful to know):

Everyone has a 1 in 25 chance of being a carrier (although there are different strains that cause v different severity of CF)
CF is, as you know, a genetic disease. We all have two of these genes and pass one on to our children.
Carriers have one CF gene and one "normal" gene. People with CF have 2 CF genes. everyone else has 2 "normal genes.
As you only pass one gene to your child the maths are as follows:-
Both parents have CF - child will have CF
One parent has CF and other parent "normal" - CHild will be carrier of CF
Both parents are carriers of CF - child has 1 in 4 chance of having CF, 1 in 2 chance of being carrier and 1 in 4 chance of being "normal"
One parent is carrier and other parent "normal" - child has 1 in 2 chance of being a carrier.

I was tested straight away and as I was pg they got the results to me in 10 days (luckily I am not a carrier). DS has a i in 2 chance of being a carrier and we have ben advised to get him tested at 16.

As pp has said, even if OH is a carrier you can still continue with ivf as they can test the embryos before ET.

Hope this helps - let me know if you need any more info. It is a stressful time. We got through it by thinking that the only reason we were worried is because we knew - as everyone has a 1 in 25 chance of being a carrier we felt lucky to have the information!

Good luck

Amanda
xx
 

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i was not a CF carrier and we did not test DH but i know he is likely a carrier as his sister is (this is sister by same mum).  He had an older sister (different mum same dad) who had CF.  His dad had 3 kids with the first wife and 2 were ok 1 had CF.  His dad has 8 kids in total but i imagine they all potentially carry the gene from him.  What i am saying is its not a given you get a CF child from being a carrier but you are at high risk.  Pre-implantation genetic diagnosis on your embies would show if the embie had CF gene - it costs though. Chat to your consultatn about it.  If you DH not a carrier though you won't have a CF baby.

I thought i also read somewhere that you could eggshare if the person you was giving eggs to did not mind about the CF gene - providing i guess that her DH did not have it?

^hugme^
 

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You should note that the 1 in 25 figure for carriers is for people from Northern Europe so if your racial heritage is different the chance of being a carrier is different.

If only one parent is a carrier there is a chance that the child could also carry the mutation.  If the child is a boy sometimes, particularly in the case of one of the commonest mutations, the mutation will result in CBAVD -congenital bilateral absence of the vas deferens. This is usually only picked up in adulthood when sperm tests show no sperm (there is sperm it just has nothing to travel through). CBAVD is present in most men with CF but also exists as a condition on its own and is not necessarily "mild CF" although in some men it is the only manifestation of their CF.

You should get to see a geneticst - they are usually pretty good.

On timings for tests - the commonest mutations can be tested by most big hospitals - the other ones have to go to the national reference lab in Manchester so take longer.  They wont usually do these ones.

Best wishes
Betty
 
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