1st child is disabled, should i have another?

[littlemisszozo]

My 1st child is disabled, physically and mentally he is really behind.
We do not have a diagnosis for his condition as doctors cannot find anything clearly indicating a cause. He is currently having a genetics test done to see if anything went wrong at time of conception. (but this takes over 9 months to be done)
He is 2 now and I am trying to decide whether to have another baby. I also dont want there to be a huge age gap between them so i need to decide pretty soon whether to get pregnant again.

I was an only child myself and remember having quite a lonely life growing up and definately would have benefited from having a sibling. I really want my son to have a brother or sister as he is going to struggle with life and i want him to have someone to play with at home. But on the other hand he requires the same amount of care as a new born baby as he cannot walk or crawl just yet, so i will definately have my hands full and it will be a struggle.

As i dont have a diagnosis for my son there is that chance it could be genetic but the highest chance they could give me of it happening again is 50/50 which doesnt really help.

If anyone else has been in the same position i would love to hear your stories as it would help me a lot!

thanks for taking the time to read this :)

Hi littlemisszozo,
would you be willing to wait for the genetics tests to rule that possiblity? I realise you don't want to be wait too long for a second child, but under the circumstances it seems the option that will give you the most peace of mind.

Need to prepare dinner now, but will come back to tell you my story...

Hi Little miss
Personally I would wait until you get results back of genetic conditions. If it's nothing genetic then the chances of you having another baby needing the same amount of care or being disabled will probably be reduced greatly.
Sounds like you have your hands full at the moment with number 1.
It's not something anyone else can really decide for you obviously but looking at the commom sense part of it I'd wait for results.
Imagine if you go ahead, and then get results back and it's genetic and chances of 2nd baby having condition for example, plus the way you'll be feeling anyway being pregnant and tired out etc...to deal with that too would be incredibly hard.

I'd already had both my boys when eldest was diagnosed. If he'd been diagnosed sooner I doubt I would've had my 2nd son- although I wouldn't be without him, love the bones of him, but believe me having one with something is bad enough but having 2 is like a zillion times harder!
This is just my opinion, like I say no one can decide for you, it's what you feel you can, and are prepared to, cope with.

Hi Little miss. My DD now 16 was born with a chromosone disorder (has severe LDs and physical disabilities) although we did get diagnosis at 3 days old - so slightly different to your situation. We were told it was a 'sporadic event' and not something we carried, however in considering having other children, we were just as likely to have a child with any other condition as the next person. DS was born 2 yrs and 1 month later (we had CVS test at 11 weeks pregnancy to rule out as much as we could).
The practicalities of having a baby when the 'toddler' is not toddling are a major consideration. DS fortunately was an early walker and from age 2 walked everywhere as DD had to come out of the double buggy and go into a wheelchair with a specially adapted seat. Other than the logistics of getting around, it is amazing how you learn to adapt - in some ways its like coping with twins - I learned to spoon feed both at the same time - one spoon in each hand. Getting out and about required quite a lot of organisation but we managed. Things got a lot easier when DD started sessions at SN nursery at 2 1/2.
We never wanted DD to be an only child - although am not sure how much she is aware if her brother - except for all the shouting that goes on in the house now he's a teenager - LOL.
We did chicken out with number 3 though. Decided 2 was enough although a friend did suggest that I could have no 3 when no 2 started school - but I thought I was too old by then and DS also turned out to have HF ASD (DX aged 7) although mild so he is just like a very stroppy teenager and can be independent when he wants to be!
Good luck with your decision.

I think it's a very personal decision. For me, having a disabled child (chromosome disorder -severe developmental delay/learning difficulties) led me to have future children quicker than otherwise I might have done. I always wanted more than one, and I always wanted them close together, but with DD1, she will actually get harder work in many ways as she gets older so we decided to carry on with siblings immediately. DD2 was born 12 months after DD1, and I have another on the way - it will be a 13 month age gap to DD2. So I'll have 3 children under the age of 2 and 2 months! I know this isn't for many/most people, even where there are no disabilities, but for us it works. Yes it is chaotic at times, but I think this is the case whatever the age gap!

I would say though that we had DD1's diagnosis and had had our own chromosomes tested before we got pregnant with number 2 and knew we weren't carriers. If it had registered that there was a big risk for future pregnancies then maybe we wouldn't have carried on - I am not sure.

I didn't have to make that choice because I was already pregnant with DS3 when DS2's difficulties (ASD) started becoming apparent.

What I can say is that having a sibling is a fantastic gift for any child, and a disabled child even more. DS2 has a ready-made friend and role model in DS3. They also argue and fight, but that's par for the course!

Due to your DS's developmental delay, any gap between your DCs will seem a lot smaller than normal. It may be that your DC2 overtakes DS developmentally, so I wouldn't worry too much about a slightly bigger age gap. I would wait for the genetic test results to have a clearer picture what you may be up against. (If you can)

If it were me, I would wait for the results of the genetic tests. I just think that then you would be armed with all the information and would make a more considered judgement.

Having said that, we're only having one, although that was decided a long time ago, before any problems or DXs arose.

But only you can make the decision. Good luck.

hi, i know its a difficult decision to make when you dont know all the answers to your first childs condition and its a decision only you can make...i have 3 children 2 sons 19 and 16 and a 4 year old daughter who was born missing her left hand and part of her forearm and i absolutely love them all to bits, however prior to having my boys i gave birth to a still born little girl full term it turned out only half her heart had formed then 2 years later i had a still born son with the exact same condition, like you i had a very difficult decision to make as to weather i should try for another baby or not as i didnt want to put myself or my husband through another loss but i made the right decision for me and as i said i have 2 healthy 6ft + sons and a beautiful little surprise daughter, her missing limb was just one of those things that happen no one could of predicted it or prevented it the same goes for my 2 angel babies its was just one of those things....i wish you well and hope you make the right decision for you xx take care xx

Hi - I too was already pregnant with DS2 before we realised DS1's delays were caused by a genetic condition. We still have no diagnosis and all the current genetic tests have been completed. Although we would really like a third, we have decided to wait until we know for sure if his condition is inherited or de novo. If we dont find out before I am too old then we won't have a third.

What test is taking 9 months?

I would wait personally, a 4 year gap is not unacceptable provided you are not 40! Some genetic problems can be devastating to the child and family and sometimes manifest themselves further down the line resulting in severe disabilities or death. As you say some genitic conditions have a 50/50 chance of recurring, too high for my liking.

thanks so much for all of your messages it has helped so much :)

I am going to wait for the genetics test to come back and then decide but im sure i want my son to have a sibling at some point and they will probably be at the same development stage together then even though there is an age gap.

Just keeping my fingers crossed that we will find the answers soon!

There's 4 years between mine - not for any particular reason, just that's how long after having DS it was before we decided to have another one.

It's a nice age gap, I had 4 years with DS by himself and when DD came along I had time to spend with her because he was at nursery and then school.DS liked having a baby around and she absolutely adored him, I'm fairly sure she learned to walk just to follow him, lol.

As they've got older, they fight, but I don't think it's anything to do with the age gap, he's now a 15 yr old boy with AS and she's an NT 11 yr old girl - so they're fairly different, but for all they can squabble at an Olympic level, they're actually still fairly close

My son is 4 probable autism, can't really speak much at all, still in nappies, tantrums, etc.

Having my other little boy whose now 15 months old has been brilliant for him. My second one just follows the other around and entertains him, lol
It's lovely. (he doesn't have special needs).
I'm amazed by the amount of interacted DS2 gives me, I didn't realise all I missed out on with DS1 because of his problems.

Why don't you speak to your doctor if you're worried the next child could suffer the same problems?

Are you in touch with a geneticist? They are the ones to push for genetics tests and to hurry them along a bit.

Our experience: DD1 has 2 conditions, one inherited, one just luck. We knew about the first one when we conceived DD2, but had been waiting 1 year for the results of the DNA test that would allow us to test whether DD2 would have the same thing. We were repeatedly told this couldn't possibly happen faster. Once I fell pg with DD2 they asked DH and I for repeat samples, and produced a test result for us and DD1 within 2 weeks, in time for CVS testing of DD2. Clearly the "inevitable" delay had just been that they'd lost our samples and couldn't be bothered to ask for more.

DD1 is very low-functioning so in our case DD1 and DD2 don't really interact that much. But they are still good together and I am so, so glad we had DD2, it was absolutely the right thing to do.