To please ask for your advice? Difficult situation.

[tootsandfloots]

Hi there, I'm not sure how to write this post and didn't know which topic to put it on, so please bear with me. I'll need to keep some details vague to avoid being 'outed', so I'm sorry in advance for that.

DF (fiancé) and I are engaged and are due to be married this year. We have one child together and are both young between the ages of 20-25. Recently, DF has been diagnosed with a chronic illness and, realistically, will end up in a wheelchair eventually (although that could be 40 years away). It's potentially genetic, his grandfather had it and died as a result in his late 50's.

He's taken this news very hard, he's so upset and is going through a crisis now. I'm so sad for him and for what the future holds as he'll slowly get worse as there's no cure, just treatment to slow it down.

This is where my question comes in. I've always wanted quite a few children. We're so blessed to have one but I long for another. I'm prepared to be flamed for this. I'm just not sure, with such an uncertain future, if this would be a ridiculous thing to consider? We already have one, so my way of thinking is that child/ren are already in the equation, so would it be ridiculous to have one more (knowing that I may well have to do the vast majority of the childcare etc) in spite of his diagnosis? DP also longs for one, perhaps more so than I, but I've been holding off as I'm not sure it's fair or reasonable. Due to the situation, it feels like a now or never moment, but I want to know if I'm being completely unreasonable for considering this. Any advice would be appreciated

Ah no of course it’s not unreasonable.follow your heart.

I think you need to talk to your DF's consultant first and talk frankly. Secondly .

If it's genetic he has a 50/50 chance of passing it onto any children (assuming it's a dominant gene)
You need to go to genetic counselling at the very least.

I'm sorry your partner's been diagnosed with something so serious. Is it a condition that can be screened beforehand?

This might sound harsh but if your partner had a potentially inheritable condition do you want to do some research first. Is there prescreening available?

I would want screening for the child’s welfare for certain.

YANBU at all. You and your df have a lot of life to live together, even though it will be difficult. Medical science is moving fast too. Do you have family support?
Would it be a good idea to have genetic counselling though, to ensure as far as possible that your df doesn't have to carry the burden of having passed the condition on?

It affected his grandad, then him, no one else and isn't considered as hereditary, it remains unknown medically.

Is the illness hereditary?

If so, you're not unreasonable to think twice about having another child.

If it isn't, and you know the eventual outcome - i.e. he will be mobility-limited and eventually die, and you will be caring for your current child, your husbands needs as his illness progresses, and a potential second child, go for it. You both clearly know what's likely to happen. Is it multiple sclerosis? If so treatment has vastly improved since his grandfather's time.

All futures are uncertain. You're not unreasonable for wanting to carry on with what you both wanted before his diagnosis, although there are a lot of new factors to consider.

Can you request an appointment with a genetic specialist ? Is it guaranteed to be passed on ?

It's not MS.

It's not guaranteed at all, it's possible but not defined as hereditary as it remains unknown in medicine. His grandad had it too but no one else has in his family, so that's why I added it in.

Depends on the illness. I’d echo the need for genetic counselling. If there is a research charity associated with the condition they can often be helpful. I would assume that the biggest issue was not coping with childcare on your own but was the potential to have a child who also has the condition?

I’m so sorry to hear about your DF - such devastating news 💐

In your situation I would have another child, (sooner rather than later). Obviously if it can be screened for I’d do that.

I think you have a couple of issues here, though without knowing the exact nature of the condition it's hard to comment completely.

The first one is whether it's fair to have more children knowing one of their parents has potentially a shorter lifespan and may be unable to do things with the DC that their friends' parents do. This is a completely reasonable fear but I think unfounded - your DF may well find his disease progression is different to his grandfather's, he may well live longer (and who knows what medical science holds in terms of management of chronic illness 50 years down the line). Even if your DF does become disabled later in life, plenty of amazing parents are disabled when they have children and manage absolutely fine. In terms of a potentially shorter lifespan - my parents planned their lives around my father being the one to die first (not unreasonably), and then my mother suddenly died at a very young age. Totally unpredictable and probably something I wouldn't worry about in your case.

The second issue is whether the illness has a genetic basis and if so, whether it's possible that your children could inherit it. It's not uncommon for genetic conditions to "skip" generations, and for that reason you need to have a chat with your DF's medical team and ask them what the chances are of having a child affected. You may need genetic counselling.

For what it's worth, my DH has a similar issue although his condition isn't going to result in him needing a wheelchair in later life; he is more likely to die much younger and may end up needing a lot of medical care in the next 5 or so years. I knew about it before we had our children, there's a possibility that it's genetic (but nothing that can be screened for). We had very similar discussions to what it sounds like you're going through - we went ahead and had them, knowing that I might end up on my own sooner than planned and knowing I might have to start screening them for signs and symptoms.

There are two issues here.
The first is the potential you will raise kids alone
That wouldn't be an issue with me-proceed
The second is that the new baby may inherit something, and that your first may already have it.
This would-I think it would be cruel to bring a baby into the world with a significant chance of developing a serious condition. You need serious research with your DF's consultant regarding this. You could be potentially caring for your disabled DF, and two disabled children.
Sorry

I think I'd have one more and probably whilst quite young, do you have good reliable family support?

Hey, you're a mum, you'll probably end up doing the majority of the childcare anyway :D
Sorry to be flippant. Putting it more philosophically, knowing that life is finite and that it may be harder when you're older - perhaps you should both do as much living as you possibly can. And when you say "fair" - well, if both of you want another child, then that child is already fortunate to be loved and wanted.

Even if there's a high chance of inheriting a serious disease smith?

I just looked it up online (of course more research would be done if we went ahead etc) and it says that it's not hereditary factually, however it makes it between 5-20% more likely for the child to develop it if one of the parents has a positive gene.

Definitely ask for genetic counselling. They will be able to help you understand the illness etc at length when it comes to having babies. I say have more kids! If he’s not going to be in a wheelchair anytime soon then you can both enjoy having more children especially when they are small. It’s not selfish. It’s life and these things unfortunately happen so you have to make the most of what you have now.

Ok let’s look at the 5-20%. This is similar to
MS as I have a familial link (my father died from MS) I have a 20% increased likelihood of having it. In Glasgow MS affects 1in 1000 people, in my higher risk group it’s 20 in 1000 so that’s 980 in the higher risk group who won’t have it. Does that make sense?

I have ms. It cane to a head when I was pg. We are waiting for a dx for dd(18) for CFS/ME and Fibromyalgia, she is in constant pain and often unnaturally exhausted. She has hyper-mobility issues, though not as serious as they often are.

If I had been dxed at about 15 when I had what I can now see clearly was an ms attack, I would certainly have had my tubes tied once I was in my 30s, if not before.

Would I be without dd? Not a chance!

I'd give yourself and DF time to process this news first, really sorry you're going through this but I'd deal with the situation at hand before making it anymore complicated, you're both very young and even with his diagnosis you've still got plenty of time to raise a child together.

If your DF is struggling with how to process this news and isn't already then I'd look at getting him some counselling and when he's had some time to take everything in and seems more settled then discuss the possibility of having another child together.

I'd get genetic counseling and consider donor sperm if there was a chance my child could inherit it.

I have two genetic conditions, but neither are life altering, more an annoyance. I would still have had children if I had known beforehand. I wasn't diagnosed until I was 50 and obvs my family was complete by then.

My father had a degenerative genetic neurological condition. It's not common and it seems to 'skip around' randomly in families so there's no way to predict who it will affect. It's a bit like Russian Roulette in Dad's family as just having the gene doesn't mean you'll get the disease. And not having the gene apparently doesn't mean that your children won't. TBH, I probably wouldn't have had children if I had carried the gene but DBro and I are adopted (Mum couldn't have children) so it wasn't a concern for us. I'd probably have adopted or used a donor egg.