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Having more kids with Special Needs? Separation of all in...

(13 Posts)
bkp014 Tue 11-Dec-18 21:15:56

Please help, I'm running low on life's zest and I don't know what do anymore.


My wife and I have a little girl with SMA type 1. She's two and she's beating the odds (thanks to a trial of Spinraza). While I am grateful that she is beating the odds, our lives are far from the norm. We are a hospital family. Our lives (especially my wifes), are controlled by the many appointments and special care that our daughter needs to live.

More Kids????

To me, our hands are full but my wife wants more kids - plural. As a compromise, she might be okay with one more but at this time I don't know if I can do one more. I love kids, but I also want my wife to be a wife. I.E. A wife vs a mom. It may seem like I am splitting hairs, but this is a serious issue for us. Normal kids take time, but I compare parenting a special needs kid to parenting on steroids! Everything takes more time, which leaves no time for us to foster and keep our flame alive.

How do we do it? I'm torn, we have argued about this for too long. She wants kids now, I want a stronger relationship so we don't have a "band-aid child". In her words " I need to shit or get off the pot". I.E get on the having kid's train or start the separation proceedings.

In addition to the above, SMA is a genetic disease. There is a 25% chance that this happens again. I'm not sure I can handle two special needs kids. It's selfish, but I think that if we have two special needs kids I'll have to give up to much of who I am to help these sweet little babes live in this world.

GreenEggsHamandChips Tue 11-Dec-18 21:23:18

I can totally understand the desire to get off the pot!! Having had one with SN risking another was less than appealing (although in my case Id had my mostly neuro-typicle one first). Ive had the occasion wobbly, but i know not having more is the right choice

I dont think its selfish at all either. I think its about using what resourses (emotional, physically and financially) as best you can andnot putting them under more strain. Where that leaves your relationship i'm not sure

bkp014 Tue 11-Dec-18 21:55:20

Thanks for the note. I am emotionally spent right now. Maybe my tank will be refilled. But right now its pretty dry.

The odd part is, some would say I quite risky and that 25% chance is nothing to worry about. But gambling with emotions and lifelong conditions is extremely emotionally draining for me.

olivertwistwantsmore Tue 11-Dec-18 21:57:48

Lord. 25% would be too high a risk for me. Is there any genetic testing you can have before you ttc?

bkp014 Wed 12-Dec-18 13:44:18

I agree, 25% is uber high!

We kinda can, but it's expensive (30-50K). We would have to participate in selective in vitro. I'm not a fan of this rout either because of our past experiences.

To get pregnant the first time we did quite a few rounds of IUI, had multiple miscarriages and eventually she got pregnant naturally. When she was pregnant things were good and then 9 months later we had a little girl. We finally thought we were in the clear. Six months later we got the diagnosis.... No more clear sailing.

Even if we bank on having a healthy baby, which is something I would forever be grateful for!!!!!!!! We still need find time for each other, no?

Womantheonlykind Wed 12-Dec-18 13:57:08

I won't say one way or the other and nobody can tell you how to decide.

I will point out that there is no crystal ball. You could have a healthy child now who has an accident in years to come leaving them requiring ongoing care. One of you could become unwell needing the other as a carer. Life is fucking random.

You have a heads up on some of it with genetic testing. There are no guarantees. You can do a best case scenario and a worst case scenario and then the rest will always be a gamble so plan ahead as much as possible. Get counselling to talk it through if you need to.

There is no right or wrong answer but you absolutely have to mean it and stick by each other once the decision is made so let that help you decide. If it matters then you will always find time for each other, just understand it may be at the expense of other things whilst you outsource care or lean more on your support network.

The only constant is change.

bkp014 Wed 12-Dec-18 17:14:34

I agree. Change, taxes and death. The only things that are certain.

Thanks for your voice.

MumUnderTheMoon Mon 17-Dec-18 00:27:43

I don't think your selfish at all. Neither is she in the wrong though. Many people have more than one child with special needs and are perfectly happy. I however have one child and wouldn't have another because I can only do it well once. If you are convinced that you do not want another child then do not have one and make sure you take care of contraception so that there aren't any surprises.

SleepingStandingUp Mon 17-Dec-18 00:36:50

I'm so sorry for what you're going through with your precious girl.

How old are you both?

It took DH til DS was 2.5 to say yes to trying again. He has a chromosome disorder that initially was thought to be life limiting but now not so. But he spent 18 months in and out of hospital, is tune fed and on permanent o2. For DH he THOUGHT there would be a time when he'd be ready but wasn't sure. I have shot fertility and am nearly 40 but we're trying. But he took longer to be ready and we were lucky thag he stabilised.

I understand your wife's need. Possibly having always wanting one but also wanting the chance to be a bog standard Mum to a child she gets to have screaming arguments with at 13 and grandkids from when she's 60.

Your ages will make a big difference to how long you can weight, look forward and ask where you see yourself in a decade.
Will the NHS not offer any genetic screening?

Good luck x

BertieBotts Mon 17-Dec-18 00:47:25

Could you do cvs early in a pregnancy with a view to potentially terminating? I know that's a horrible thought. Or donor sperm for home insemination? Cheaper than IVF.

Sorry this is more practical than emotional, and I appreciate both come with their own challenges and aren't an easy fix.

If you're in the UK you can do IVF with PGS privately in Portugal I believe for about £8-12k though the likelihood of this after Brecit is anyone's guess.

bkp014 Mon 17-Dec-18 13:49:01

Thanks everyone.

My wife and I are both 32 and we live in Canada. If all things went as planned we'd be done having kids by now but that ship has sailed. She's very concerned that she's running out of time and no matter how many times I tell her we still have time, she wants to be pregnant now.

We have talked about conceiving and testing, donors, and adoption. All the options have their pros and cons and related consequences. In order of preference, we'd like natural option first followed by a donor then adoption. We even had two females ofter to carry a baby for us but it was more of a comforting/pity offer. Like if the stars align "I'll do it". It was a nice gesture, but I don't need their pity.

I grew up in a large family so I can see a future with grandchildren and joys that bothers and sisters have. I just hope I can come around to try and provide that life for my wife. Right now it just seems like an impossible hill to climb.

SleepingStandingUp - I'm right on cue with your timeline. Different conditions but the first couple of years have been tough for sure. Our little babe is 2.5 and we are having these future kids conversations. How's your little one?

SleepingStandingUp Tue 18-Dec-18 00:12:52

He's doing remarkably well all things considered. He has a mosaic condition so we've been blessed with a mild phenotype. Never straight forward but we're getting there. Wonky heart, wonky lungs but I know how lucky we are
I'm 37 soon so the time pressure on us is immense. I'm so aware the risk of complications goes up with age anyway but it is a spontaneous mutation anyway.

How would you feel is she fell pregnant tomorrow accidentally?

I assume your wife is a full time carer for your daughter? Have you talked about how she'd cope doing hospital stays heavy pregnant (our one ward had fold out beds but most of them are pull out chairs) or with a new baby? Who normally sleeps over in hospital with her? How would she feel not being ae to do it because of the baby? Talking through the practicalities might help either if you see things differently and more clearly

bkp014 Mon 07-Jan-19 15:09:02

I'm glad he's doing well! I am happy for your good fortune in your unfortunate situation.

I have been thinking about your question. What if she fell pregnant today or tomorrow.

1. I'd freak the F**K out! Not at her or the situation I'd just start to think about all the things that could go wrong. Waiting 9 months to see if your child is going to have a chance at a normal life is a long time. (I'd do this silently in my head)

2. I'd try to be happy for my wife as I know this is what she wants.

I'll talk to her about your suggestions. They are very good points to cover.

Happy new years to you all. I hope you enjoyed the holidays.

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