To be so worried about having a disabled child

[igglepigglestiddle]

I have a nearly 3 year old DD with additional needs, who is is delayed in all areas of her development. Her first year was awful - she was extremely difficult to look after and I found it very hard to come to terms with her disability.

Since then, though, life has been better. DD is non verbal and her behaviour remains very challenging - but we love her, we have good times together as a family and we are managing. DD still has no known diagnosis for her difficulties although we are having genetic testing to try and identify one.

DH has always been keen to have another child, but I have wanted to stop at 1 - DD takes up all my energy and I’m not sure I could manage another. I have, however, been stupid and careless (literally once!) and am now pregnant again.

I am now absolutely filled with dread about the whole thing. I’m worried we won’t cope and really worried we will have another child like DD - and this has stirred up all the dreadful feelings I had about DD early on. I really thought I had made peace with it all - but clearly I haven’t if I am so worried about having another one?

I haven’t told DH as can’t face him being pleased about it - and I’m being dreadful to both him and DD. How do I snap out of this and get on with life?!

Not sure if you have Instagram but it might be worth looking at @dontbesorry2.

The lady has a first born son who has Down's syndrome and two older children without a disability. She documents her day to day life with the children and has written two books.

Don't feel guilty about your thoughts I think they're perfectly normal.

Call your genetics team and let them know you are pregnant. There may be tests they can fast track for you.

@NurseEssie - I have a disabled daughter and truly wish I could live in the now and not constantly worry about the future. Do you care for a disabled child? If not, then maybe go and squash someone's advice on a different thread.
In answer to the OP - my daughter is our second child so the circumstances are a bit different - if she was the eldest I do not think I would have the energy for a second.

We had a second son when ours was 7 years old, so a lot older and longer to think about the advantages and disadvantages and go back and forth and back again...not sure to this day whether the extra time is a good thing 🥴

We didn't conceive accidentally but did just decide to leave it up to fate, I had a MMC when my older son was 6 and then the following year I found out I was pregnant again and we had our second son. My older son is extremely challenging and has severe learning disabilities, autism which definitely does disable him and is still non-verbal at 9 years old. I'm not saying all this to put him down, he has huge challenges in life and therefore so do we. I hoped a sibling would help him and it has, in some ways, in others it has probably made life more difficult and bewildering for him but I don't regret my second child for a second. It's probably still too early to say whether he's NT or has any other challenges (and of course difficult times can come at any age and for many reasons) but regardless he has brought light into our lives during a very dark time. It probably sounds to some like we wanted to 'get it right' (when actually we know more than most that nothing should be taken for granted and life can be very hard indeed and feel extremely unfair, but that's just the way the cards are dealt) and maybe we hoped for that in some way but our eyes were WIDE open to the possibility of the same or different difficulties. I don't think it would have even helped us cope or support better a second time around but it wouldn't have been the absolute soul-crushing shock and despair we experienced as our big boy's disabilities and difficulties became clear.

Sorry, I am rambling. I think you need to trust your instincts. You know what you handle and the care you give now, you probably would have never thought yourself capable of spinning those plates before your daughter was born. Let alone with a job and other responsibilities; you are amazing and if you decide to continue with the pregnancy you will no doubt rise to whatever challenges face you and your husband. That said, the decision whether to continue or not must be based on your instinct and knowledge of yourself and your current little family. I'm sure you probably know what you'd prefer to do, but the what ifs and worry of inviting more struggle are huge worries to contend with. If there is someone in real life you feel you could talk this through with and it would help, I'd encourage that. Failing that then I am just at the other end of a message if you'd like to chat.

Good luck 💗

I have two DC with complex needs. 2nd child had medical issues at birth which is why we thought she was disabled. I was already pregnant by the time she was three and things were more difficult. Youngest is very severely disabled and they have the same disability. Life is really really hard. I also work but I’m worn out and ground down. I’m envious of people who get to experience their child’s first words, share experiences with them and generally get moments they can look back on fondly. I adore my children but caring has left me a broken person, who is incredibly isolated.

I would talk to your husband and consider the worst case scenario and whether realistically you could manage if you do have another child with a disability. It’s okay to say you wouldn’t and decide to focus on your dd.

Good luck with whatever you decide and be kind to yourself.

Yes 'live in the now' is all good if you already have a disabled child. There's a chance OP might have another disabled child. So live in the now is very carefree.

Tomorrow will still come and as long as you're aware of the circumstances and are happy to deal with them, then 'live in the know'

If you think you might struggle with the potential outcome, then maybe don't 'live in the now' and be more cautious and spend more time considering your future.

@Morganchristie puts it correctly: consider the worst possible outcome.

Whereas 'live in the now' to me is: 'meh, whatever will be will be, why think about it. I'll just live in the now, I wont carefully consider what might happen'

I really disagree with this- this is not just a one night stand or a very casual boyfriend, this is the man she married (though even then, I think a boyfriend should probably be told)- how can you advocate hiding something as significant as a pregnancy or termination from him? It would be a deep betrayal to hide those things from her husband, barring something awful like domestic violence where telling him would put her in danger. I can’t believe you would do that to someone you genuinely loved, because “it might cause difficulties”.

Whilst it is absolutely OP’s right to have a termination if that is what she feels is right for her, and it is also true that her husband has no say either way here, he is still entitled to an opinion. The fact that he might not share op’s views does not make it fine to lie to him about it. Lying to your spouse in a situation like that is unforgivable IMHO.

It is a difficult situation, a really tough one and one which OP should not have to face alone, ideally. It is also a situation her husband has a right to know about and a right to have an opinion regarding where they go from here. hopefully, for OP’s sake he will fully support OP whatever decision she makes. However, if either keeping the baby or a termination is a deal-breaker for either one of them, both have a right to make that choice.

Say OP does decide on a termination and hides it from him successfully for now- what if he finds out at a later date? Don’t you think things will be a lot more “difficult” then? Or what if OP needs support at some point but can’t tell him, so could struggle even more?

How often do we hear it said on MN that any man not wanting a child (or another one) with a woman who does want them should be honest so that she can make a decision to stay or leave knowing the situation? Same applies here- if OP does not want any more children (and it is totally understandable why she would feel like that)- including this one- then she needs to be honest with her husband so he knows where he stands and can decide what he wants to do, knowing that information.

OP- I’m sorry you are in a tough situation. I agree with a previous poster regarding seeking pregnancy counselling to help you to decide where to go from here. Ultimately, you must do what you feel you can cope with, and none of us can tell you whether proceeding with this pregnancy is the right thing to do or not. But I do think you need to tell your DH at some point, and discuss where you go from here.

@NurseEssie - I am not going to derail the thread but think you have totally misunderstood what I posted.

it is also true that her husband has no say either way here, he is still entitled to an opinion

I don’t get it. If the decision is entirely OP’s and he has no say, why does he have a “right to know” and a “right to have an opinion”.

I have been in a similar position and found that speaking to the genetics team and the genetics counsellor really helped.

Relate to everything you said in regards to your first child.
Before I planned my second child my partner and I had to agree that we'd be ok if exactly the same thing happened again. My child has come on leaps and bounds though but is still obvious enough to receive a diagnosis of global developmental delay.
My second child seems to be developing normally, so it's a relief and wonderful to get to do the 'normal mum' things I missed out on. I'd have hoped I'd be ok if it had gone the other way, but you never really know. What I do think is as you dealt with the unexpected once it is less of a shock if it does happen maybe? It's obviously harder dealing with first child with disability with a sibling but you get so good at dealing with your own child it's probably similar to other families anyway going from one to two.
The questions to ask yourself are can I afford this financially, logistically and do I have a good support system and future plan.

If that's all in place I think you are in the place you need to be.

Good luck in whatever you do.

I assume your dd has a paediatrician or is under the care of a hospital or community team? If so contact them asap, they will be able to rush through the results of dd's genetic tests and talk you through this as they will have had many families facing similar decisions. In London we're looking at an 8-10mth wait for genetic test results but if there is a reason to expedite we can get them back within 2 weeks, a recent urgent request was returned within 2 days. So many families go through similar situations, either because of unplanned pregnancy, needing to make decisions quickly on whether to have another child due to age etc or when a child receives a difficult genetic diagnosis during another pregnancy. It's your decision to make but you're not alone and advice from a doctor who knows your dd may be able to help you and your DH. All the best, this must be such a difficult decision.

@Tandora because he is the father and OPs husband, Generally, these are joint decisions when two people are married, though obviously the woman carrying the child has the final say because it is her body. OP’s DH cannot prevent OP having a termination, nor can he force her to have one, but he can have an opinion on whether he wants to have another child and having a termination without telling him is totally unfair.

I was already pregnant when my dd1's delays became obvious (actually they were there from birth but as first time parents we were oblivious) so for us no choices to be made, in all honesty having a second child at that point was very hard and for 3 years it looked likely she was autistic too but she lacked the global developmental delays her sister had (good!) and by 4 it was obvious she learned behaviours off her sister rather than was autistic, she is however dyslexic.

For us everything worked out as dd1 did learn to talk (aged 4) her fine motor caught up thanks to great advice from her ot (still friends with her) she's still very clumsy, lacks social skills etc but academically very bright thankfully, seizures stopped at puberty. But it wasn't a given so i really get the difficulty, I can emphasise because what if dd2 was like her sister? What if they were non verbal for life?

I cant advise anyone far too personal, but at 3 things could change a lot, it did for us