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I would do it.
I am a carrier for colour deficiency in my boys... it may not seem terrible to some, but my eldest DS can hardly see any colour, and that is so so so sad. I wish there were ways to have that stupid bit of DNA removed or altered.
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My advice would have been no different than that you've already been given (once you find out the results of the test to see whether you are a carrier, then see a genetic counsellor).
But I also wanted to send you this:, it's such a difficult position you are in.
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He has his daughters to think about too. He is wonderful for doing this and I'm glad I am aware of it now and not in 10 years when I have three boys running around and I'm heartbroken for them. He didn't even know he had the illness until he was 30.
Lisa - If only it was as simple as just removing a bad gene huh? My DH is colour blind so I know how horrible it can be - especially when he was a kid and couldn't distinguish between red and blue crayons.
Suse - Thank you, you are a sweet heart.
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Amy I would have IVF and genetic testing if I were in your situation. Without a doubt.
BellyBelly Member
I would do it without a doubt too.
Although Kane doesn't have anything near like your talking about, I would of done ANYTHING and spent ANY AMOUNT to have him not going through all these surgeries, having hearing difficulties, speech difficulties, and permanent scarring. He also has years of dental work to look forward to, and a hip bone scraping.
If something could of been done beforehand, It would of been my top priority.
I couldn't imagine watching your child go through something like your uncle, if you knew you could of prevented it....
Good luck hon, and I pray all is good with your testing!!!!
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Jodie I can't imagine the pain you are going through watching your little man go through all of that. He's such a gorgeous little guy! I think as a parent it is our duty to protect our children from harm and if we can prevent an illness then we are obligated to do everything in our power to do so. I know you would have done anything to stop your little man having to go through all of this. He's a lucky boy to have you!
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I just rang my uncle to clarify exactly which type of MD he has. He said it's a very rare form which is why he is undergoing so many tests. He doesn't think I will be able to just get a blood test to find out (as you said Kate), I will need to get a referral to a genetic counsellor and go from there as it takes very specific testing to locate the gene.
Not really sure where to go from here. I'll need to talk to DH to see what we need to do and when we should do it. We don't have any IVF clinics here (closest is Canberra which is 2 hours away). We're not planning to even start trying until June next year so it's possible I'm going to have to sit on this one for a while yet.
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I don't think I'd do it personally.
It's not a moral issue for me, more a financial one & emotional one. Knowing what the chances are of IVF working in a cycle, it could take many cycles to achieve a pregnancy (and perhaps never achieve a pregnancy) and I just simply could not afford it. The emotional toll that unsuccessful IVF puts on a couple is huge as is successful IVF when things then go wrong.
Is it possible to have an amnio done during a pregnancy & test the amniotic fluid for the gene in the same manner we test for DS and other trisomies? I have no idea if this is possible, it's just a thought.
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Yes it is, however that would then leave me with the decision to terminate should that child be male and be proven to have the mutated gene. That would absolutely break my heart to make such a decision.Is it possible to have an amnio done during a pregnancy & test the amniotic fluid for the gene in the same manner we test for DS and other trisomies? I have no idea if this is possible, it's just a thought.
If we go down the road of PGD and IVF then the embryos are tested and selected prior to implantation. The odds of falling pregnant are less, but at least we know we will have a healthy bub. I couldn't put a price on that.
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There are no guarantees of a healthy bub with IVF. It might not have the gene that you are trying to avoid, but could have something completely different as an issue. You could still need an amnio because of a bad NT result (like I had) or because it appears that bubs has a major heart problem (I know someone who had to do this).
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I realise that satya - however these risks are also present when concieving naturally. There is no guarantee either way of having a perfectly healthy baby.
However, by having PGD done it at least rules out Muscular Distrophy - which is what this thread is about. That is where my concern lies. And if I can avoid passing on this horrible illness to my child then it is my duty to do that.
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Hi Amy,
I feel I've been in a slightly similar situation to you. Before we knew my carrier status, DH and I chatted a little bit about what we'd do if it turned out I was a carrier. Our thoughts were we could adopt, go with the IVF and do PGD, or use donor sperm. Like you, the thought of undergoing the testing while pregnant and then trying to make a decision was too much to even consider.
In the end we took it step by step. We didn't plan any IVF cycles or even really do any investigation into what was involved in IVF until we knew what we were dealing with. So my advice to you would be to try (*hugs* I know this is easier said than done) not to think too much about what the next step is until you know what you're dealing with.
Also, I wanted to say that during the counselling we did as part of the IVF treatment I learned that you have a higher chance of falling pregnant during an IVF ICSI cycle than you do naturally. Of course this depends on your age and if you have fertility problems or not, but from memory I had a 25% chance of falling naturally and 50% of falling with IVF. As I mentioned we did the IVF due to male fertility issues, and apparently I checked out ok. FWIW we got lucky on our first cycle, so you never know (we were preparing ourselves for years of trying). Emotionally, I think we felt differently because IVF was our first port of call when TTC, it wasn't after years of trying and I think that made it emotionally easier for us to deal with. I always felt very out of place in the LTTTC forum because we weren't long term at all.
Sorry to waffle on a bit, but I just wanted to add in some hopefully positive thoughts. I hope you can find some good answers from your doctor or genetic counseller whatever the outcome of your blood test is. *hugs*
Tish
xx
Registered User
Hi Amy,
I feel I've been in a slightly similar situation to you. Before we knew my carrier status, DH and I chatted a little bit about what we'd do if it turned out I was a carrier. Our thoughts were we could adopt, go with the IVF and do PGD, or use donor sperm. Like you, the thought of undergoing the testing while pregnant and then trying to make a decision was too much to even consider.
In the end we took it step by step. We didn't plan any IVF cycles or even really do any investigation into what was involved in IVF until we knew what we were dealing with. So my advice to you would be to try (*hugs* I know this is easier said than done) not to think too much about what the next step is until you know what you're dealing with.
Also, I wanted to say that during the counselling we did as part of the IVF treatment I learned that you have a higher chance of falling pregnant during an IVF ICSI cycle than you do naturally. Of course this depends on your age and if you have fertility problems or not, but from memory I had a 25% chance of falling naturally and 50% of falling with IVF. As I mentioned we did the IVF due to male fertility issues, and apparently I checked out ok. FWIW we got lucky on our first cycle, so you never know (we were preparing ourselves for years of trying). Emotionally, I think we felt differently because IVF was our first port of call when TTC, it wasn't after years of trying and I think that made it emotionally easier for us to deal with. I always felt very out of place in the LTTTC forum because we weren't long term at all.
Sorry to waffle on a bit, but I just wanted to add in some hopefully positive thoughts. I hope you can find some good answers from your doctor or genetic counseller whatever the outcome of your blood test is. *hugs*
Tish
xx
Registered User
It's amazing how much a good nights sleep can ease your mind!
The reality is still there though. DH and I won't be able to just start TTC and see how we go. Our first step will be to see a genetics counsellor and we will need to discuss our options from there. We spent last night with my parents discussing everything which was fantastic. The best case scenario will be that the genetics counsellor gives us the all clear and we can go away and make babies ourselves. The worst case scenario and that we will need to do PGD and IVF and we won't be able to concieve naturally, despite both of us being in perfect condition to do so. But even in the worst case scenario, we will still end up with a baby - and at the end of the day, that is all that matters.
I want to thank everyone so much for your advice and for sharing your experiences. This really hit me hard this week because it's such a stone, cold reality that I never dreamed I would have to face. I can't imagine how I would be feeling had I not been able to discuss this issue with everyone here. I am a lot calmer and relaxed now and will deal with this step by step.
Thank you all so much
Life Subscriber
Amy, I can imagine how hard it must be to have to deal with this. I'm glad you are feeling better about it all and I think you are right to deal with it one step at a time. I am sure it will work out for you.
Registered User
Hey Amy - long time no speak hunny. I just came across your thread and wanted to tell you I think it's great that you are considering all these options and getting to the bottom of your feelings before TTC>
I think the first step, as you said is to get the testing done - if yiu can - and speak to the genetic counsilor. It is a very tricky situation - but if it were me..... I'd go the IVF, sex selection treatment. The cost, highs and lows etc are a downer to IVF. BUT you, DH and your baby would go through way more if they had this disease...
Also I totally understand you thinking that this would never be your reality - i felt the exact same way way when found out about DH spermidoos - but it is okay! It will be okay and we will be mums.
Take care hun..
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