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1 child with illness - having another baby...

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26 replies to this topic

#1 anon000

Posted 17 April 2012 - 10:56 AM

thanks all original.gif

Edited by anon000, 17 April 2012 - 11:38 AM.

#2 sandgropergirl

Posted 17 April 2012 - 10:59 AM

for me personally? I'd choose C

#3 ubermum

Posted 17 April 2012 - 11:00 AM

It would depend on the financial position of my family. I would choose B or C.

#4 ani1

Posted 17 April 2012 - 11:02 AM

C would the best option.

#5 anon000

Posted 17 April 2012 - 11:04 AM

sorry, I am wondering if I am misunderstanding the seriousness of the illness. I wonder if anyone would TTC naturally with no intention of terminating...

#6 2bellaboos

Posted 17 April 2012 - 11:05 AM

I couldn't terminate a featus or discard an emryo so for me the options are A or D.

OP - this is a very personal decision to make. I know you are just putting your feelers out beause understanding how other's think and feel on the topic somehow how gives you some comfort when it comes time to make the decision but in these circumstances I don't think anyone really knows what they would do unless they've ACTUALLY been in that situation, so please take these responses with a grain of salt.

#7 ~LTM~

Posted 17 April 2012 - 11:09 AM

If possible I would use IVF to screen for the disease, but not choose the gender if that makes sense.

#8 onyerbikeluv

Posted 17 April 2012 - 11:11 AM

I'd choose C.

However we were actually thinking about this as our DD has a genetic condition (non-life threatening once managed, doesn't leave her in pain or affect development but a PITA nonetheless). After looking into gender selection for medical reasons we decided to take whatever we were given and try naturally. BUT if DD's condition had been such that the child would be in pain or have a poor quality of life, etc - then no doubt we would have gone with gender selection to rule that out.

In the end our decision was made easy for us as we found out that DD's was a "new mutation" (so genetic condition was not from us), so we are now waiting for #2 who can now expect to be unaffected.

I'm all for letting 'fate' or whatever decide, but then you think about how you would do anything to make life better for your affected child after birth, so why not before birth if you can?

#9 Guest_holy_j_*

Posted 17 April 2012 - 11:12 AM

If money is no object, c). If it was, a) I would research absolute everything on conceiving a girl & follow it to a tee (i know there are no guarantees). If it didn't work, and if I got a boy which was 50/50 chance, I would accept it as being meant to be.

OP, you have to do what's right for you not a bunch of strangers who unless they have been in a similar situation would have no idea on what you are feeling and your options. Probably better to talk to people that have been in a similar position. Best wishes OP.

#10 anon000

Posted 17 April 2012 - 11:13 AM

ok, so for those who say they would use IVF to either have a girl, or as LTM said, screen for the disease (not sure if that is possible) - what if you couldnt afford IVF so you could only choose A, B or D?

#11 mez70

Posted 17 April 2012 - 11:13 AM

I would go for option
E : undertake an IVF cycle using PGD which would then be able to screen any embyro's for MD. This would allow any healthy male embyro's as well as Femal embryo's a chance to be transferred.

We have faced a similar choice re sex selection for medical reasons and it is possible. It is more complicated than regular IVF as you are required to have genetics counselling and then you need to submit an application to the Infertility Treatment Authoriity (or what ever the current name for this board is) outlining the medical reasons EG sex determined medical condition and then wait for the verdict. To determine sex prior to transfer you are using PGD anyway so I would prefer to screen for the condition rather than sex as it would mean you have a greater chance of another child as all healthy males will still be able to be transferred as well as any females.  It would be a great idea to contact your states genetics department and ask if you could speak to some of the genetic counsellors as they are great sounding boards and know what options and what risks etc

#12 Feral-as-Meggs

Posted 17 April 2012 - 11:13 AM

It would depend on finances and severity of son's disability.

If there was enough money to provide whatever my son needs by way of aids and assistance, and  it looked like he would be able to lead a reasonably independent life then I'd do IVF if I wanted another child.

Is it possible to use PGD to screen for the actual illness, rather than manage the risk by gender selection?

#13 anon000

Posted 17 April 2012 - 11:15 AM

for the record, this is not for me, it is a theoretical question.

#14 Kemma

Posted 17 April 2012 - 11:18 AM

I'm not sure if your question is hypothetical but here's something to consider.

My uncle by marriage has MD. Out of his and my aunty's 3 children - 1 boy and 2 girls - only 1 child has MD. And she's a girl.

How does that fit with your situation?

#15 Bluenomi

Posted 17 April 2012 - 11:20 AM

I would use IVF and get screened for the disease (provided it is once they can test for)

#16 la di dah

Posted 17 April 2012 - 11:20 AM

QUOTE (anon000 @ 17/04/2012, 11:13 AM) <{POST_SNAPBACK}>
ok, so for those who say they would use IVF to either have a girl, or as LTM said, screen for the disease (not sure if that is possible) - what if you couldnt afford IVF so you could only choose A, B or D?

If its a combined recessive from both parents, I would look at donor sperm or ova. AFAIK donor sperm is cheaper than IVF.

#17 Guest_~Karla~_*

Posted 17 April 2012 - 11:20 AM

C or D. It would depend on which type of MD.

I have twins with multiple medical conditions. One just underwent muscle and liver biopsies to rule out MD, and we are now looking at some kind of metabolic/mitochondrial disorder that, judging by the recent deterioration, is likely to be degenerative. There's no way I would deliberately have another child if we knew there was 25% chance they would have it too.

Before we even realized that our boys' condition was going to be degenerative, we had decided not to have anymore children because of the incredible amount of care they require. We already had an older child who we felt was missing out on so much as it was. I fell pregnant accidentally (we were using contraception, but it obviously failed) and we thought long and hard about bringing another child into our family. In the end, we did and I'm very glad of that now because I'm absolutely besotted with him, but I do wish DH had organized his vacetomy earlier.

I think you really need to organize some genetic counselling for yourself and also you need to speak to your sons specialists about his future. Depending on which type of MD, the prognosis may be vastly different to what you are imagining.

Good luck. It's not an easy decision and there's so many more elements to consider than most people will realise.

#18 anon000

Posted 17 April 2012 - 11:21 AM

QUOTE (Kemma @ 17/04/2012, 11:18 AM) <{POST_SNAPBACK}>
I'm not sure if your question is hypothetical but here's something to consider.

My uncle by marriage has MD. Out of his and my aunty's 3 children - 1 boy and 2 girls - only 1 child has MD. And she's a girl.

How does that fit with your situation?

ahh! This is what I was wondering. From the information I read it said it was much more common to affect boys, however there is a small percentage of girls that are affected. It didn't say if it was genetic in the sense that if you had 1 child it would be highky likely to pass on to other children.

#19 Kemma

Posted 17 April 2012 - 11:24 AM

As far as  aware it's no more likely to affect one sex than another. So that means that each child, regardless of their gender, has the same chance of having MD. Having a child with the disease previously has no affect on subsequent outcomes.

#20 mez70

Posted 17 April 2012 - 11:24 AM

Ok if this is not for you WHY do you need to know??? Are you trying to understands someones thoughts or actions on this matter.

This is a very personal matter and I am actually sorry in way I replied earlier. There is no right or wrong answer and what is the best thing for one family is not another. It is also very painful and intimate. There are a lot of mums on these boards who have face this very choice those who have elected to use almost every option you have suggested and what each family has done is right for them, for their families. There a a lot of mums who chose not to undergo IVF however they had risky CVS and amnio's which could have caused a perfectly healhty babe to M/C or put the parents in a horrible place of having to choose.

If you are a friend or family member of someone facing this I suggest you support WHATEVER they choose as THEY are the ones who have to live with it

#21 anon000

Posted 17 April 2012 - 11:28 AM

mez70 - no no, I don't know anyone, just hypothetical. I realise it is a personal decision. I was just trying to understand how the illness works really and then I started thinking about this side of it. I hope I haven't offended anyone...

Edited by anon000, 17 April 2012 - 11:29 AM.

#22 la di dah

Posted 17 April 2012 - 11:30 AM

QUOTE (anon000 @ 17/04/2012, 11:21 AM) <{POST_SNAPBACK}>
ahh! This is what I was wondering. From the information I read it said it was much more common to affect boys, however there is a small percentage of girls that are affected. It didn't say if it was genetic in the sense that if you had 1 child it would be highky likely to pass on to other children.

It depends which type of the disease it is.

There are three primary types of inheritance in which the faulty gene that causes MD can be passed along to offspring:

X-linked recessive: Genes that are X-linked recessive are carried by the female on one of the X chromosomes that determine the sex of the child. As such, only boys will inherit conditions determined by these genes. Their mothers, known as carriers, will usually not show signs of the disease. A son of a carrier of MD has about a 50 percent chance of developing the disease, while a daughter of a carrier has a 50 percent chance of being a carrier. If a boy is unaffected, he cannot pass on MD; however, daughters from a man with an X-linked dystrophy will all be carriers. Duchenne/Becker and Emery-Dreifuss are X-linked recessive.

Autosomal recessive: For this type of inheritance, both parents must carry and pass on the faulty gene. Neither parent shows any symptoms, but each of their offspring, regardless of gender, will have a 25 percent chance of developing the disease. Limb-girdle type 2 MD and distal myopathy are autosomal recessive.

Autosomal dominant: In the case of autosomal dominant inheritance, an affected person will have MD even though only one faulty gene has been passed along. This faulty gene can come from either parent, and it can affect either sex. Each child of an affected parent will have a 50 percent chance of developing MD. For this type of inheritance, the severity of MD can vary greatly. It can be so mild that it is not recognized, but it can also be severe. Myotonic dystrophy, facioscapulohumeral dystrophy (FSHD), and oculopharyngeal muscular dystrophy (OPMD) are autosomal dominant.

So there's a type where the woman can be a carrier but rarely show signs; in that case it would make sense to try for a girl.

#23 anon000

Posted 17 April 2012 - 11:32 AM

thankyou ladidah....that is exactly what i was trying to find when I was googling original.gif

again, sorry, I hope my curiosity hasn't upset anyone.

#24 onyerbikeluv

Posted 17 April 2012 - 11:32 AM

Edited out post cos I just read more recent replies ...

Edited by onyerbikeluv, 17 April 2012 - 11:34 AM.

#25 anon000

Posted 17 April 2012 - 11:37 AM

QUOTE (Lani ♥ @ 17/04/2012, 11:34 AM) <{POST_SNAPBACK}>
(because lets face it any child could be born with a disability)

good point Lani.

in the interest of not upsetting anyone, and now that I have the information I was originally after before my brain went off on a weird tangent, I might just leave it there. Thanks for your thoughts info original.gif

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