Having more babies when you have a special needs child

by **Dairy Queen** » Thu Feb 04, 2022 3:17 pm

Hi all,
we only found out about DS when he was 15 months old, I was already pregnant with DD thankfully as it was so stressful I think I would have put off ttc.
Now that he's had his op and we are hopefull it's worked he goes to Enable Ireland. I see such misfortunes in there, now I know they all seem like happy little kids with huge hearts but I don't know if I could handle the stress.
What I'm trying to say is even though DS is special needs he isn't bad (in my eyes anyway) and I feel we should be so thankful and happy for what we have and not temp fate.
Am I making any sense?

by **avril his wife** » Tue Mar 02, 2022 11:02 am

Dairy Queen wrote:Hi all,
we only found out about DS when he was 15 months old, I was already pregnant with DD thankfully as it was so stressful I think I would have put off ttc.
Now that he's had his op and we are hopefull it's worked he goes to Enable Ireland. I see such misfortunes in there, now I know they all seem like happy little kids with huge hearts but I don't know if I could handle the stress.
What I'm trying to say is even though DS is special needs he isn't bad (in my eyes anyway) and I feel we should be so thankful and happy for what we have and not temp fate.
Am I making any sense?

No!

I think I know what you mean though. I am very likely to have the same problems in any subsequent pregnancy. As time goes by, I become more convinced that I could not cope. But, I have bonded so totally with dd, will do anything for her, and I am sure it would be the same for another...

by **Dairy Queen** » Tue Mar 02, 2022 12:15 pm

well of course I would bond with and love the baby. My love for DS has grown so much since his diagnosis, having to go through surgery and struggling with things. Maybe I can't express what I mean properly.

by **avril his wife** » Tue Mar 02, 2022 4:08 pm

are you worried that, choosing to have another baby, would be tempting fate re. profound disability?

by **Dairy Queen** » Tue Mar 02, 2022 5:52 pm

i'm not sure what I mean. I would love another baby, have always wanted 4 but we agreed on 3. There is very little known about DS's illness. Pediatrician and neuro had never met someone with it before. DS's is thankfully very mild. Some of there babies never make it and others are missing huge parts of their brains. I don't think I could cope with a profound disability, I would if it happened but not sure how well. I suppose I'm just scared.

by **avril his wife** » Tue Mar 02, 2022 6:24 pm

I somehow missed your posts about your DS' illness, but am I right in thinking that it was not genetic? So you would be very unlikely to have siblings with special needs, and have no reason to worry about that?

Assuming that to be the case, there is the worry about coping with a child with special needs AND giving due attention to siblings. I think that is a balancing act, but isn't it always? Even with perfectly neuro typical children, if you have three or four, there is not so much time for individual attention, but they benefit from each other, as well. I suppose the trick might be managing to ensure they are benefiting from a sibling with special needs in the same way. And I am sure they can.

by **Dairy Queen** » Tue Mar 02, 2022 6:33 pm

I didn't post about it as I wanted didn't want a big hullabaloo, just wanted to deal with it in my own head. There has been a study done in the U S and they think it could be related to a specific gene, very little is known. It's only 1 in 35,000 live births. But DD is here and has had scans and seems fine.

by **avril his wife** » Tue Mar 02, 2022 6:50 pm

Dairy Queen wrote:I didn't post about it as I wanted didn't want a big hullabaloo, just wanted to deal with it in my own head. There has been a study done in the U S and they think it could be related to a specific gene, very little is known. It's only 1 in 35,000 live births. But DD is here and has had scans and seems fine.

Surely they'd at least know if it was hereditary? 1 in 35,000 is not that small a number on a population level.

When my DD was born, I was the same, and left out all the drama and uncertainty, never posting a birth story.
She DD was IUGR (stopped growing in utero) and had hypoglycaemia after her birth (severe enough to cause brain damage, no idea to what extent), but she seems to be developing fairly normally. Though falling behind when compared to friends' babies of the same age. We had a paed appointment a couple of weeks ago, where he said the only area she is really delayed in is speech. Next appointment in three months, and they will have a better idea then.

I often wonder about the people on my antenatal thread who never came back, and if they had problems too.

by **Dairy Queen** » Tue Mar 02, 2022 8:52 pm

avril his wife wrote:Surely they'd at least know if it was hereditary? 1 in 35,000 is not that small a number on a population level.

DS has Dandy Walker syndrome, which basically affects the part of his brain that controls balance and movement. Like you we've seen told we won't know what he can't do till he can't do it.
Because part of his brain doesn't function properly he had obstructed hydrocaphelus and had his op in August. They releaved a lot of pressure during his op and he has slept through the night since he got home from the hospital. He would wake crying often at night and everyone was telling me I was being too soft and to be tough on him but I knew in my heart that something wasn't right. His ventricles are still enlarged so we need to watch him closely.
He is with Enable now and has started walking but is very unsteady, can't walk outside or if it's not really brightly lit. He has problems with his right hand and hates noise and certain textures, like grass is a huge no no. So far his speech is fine but speech and language therapist is keeping a close eye as his progress may stop.

avril his wife wrote:

I often wonder about the people on my antenatal thread who never came back, and if they had problems too.

I often think this too or maybe their little one's never made it.
Are you based in Cork? What padiatrician are you with?
Do they think you will have complications with future pregnancies?

by **avril his wife** » Wed Mar 03, 2022 9:42 am

It is wonderful that the operation was a success and that you are getting support from Enable Ireland. It sounds like your ds is doing really well.

I'll PM you with where I am.

My obstetrician said that any subsequent babies were very likely to be IUGR (meaning they'd stop growing at some stage of the pregnancy). And that frightens me. It doesn't help that the only other IUGR baby I've seen, was in the next cot to my dd in the special care unit, he was much more severely affected and did not have a good prognosis. But his IUGR was not picked up on before he was born, dd's was and she was induced early because of it. If they allow IUGR babies go to term there is a high risk of still birth. I'd obviously be closely monitored in any future pregnancy - I know it is very silly under the circumstances, but I hate the idea of spending all my time in a hospital again, and having another poorly baby in special care. I think that is putting me off having another child, as well as the high risk of disability.

by **Dairy Queen** » Wed Mar 03, 2022 10:20 am

I'm the same in that most other DW kids I've heard about are far far worse than DS and I completely understand how you aren't looking forward to beging so monitored. Had they known about DS I would have had a section and if would have been in neo natal. I'm glad we hadn't a clue as I had a lovely labour and am very happy with how things were. DS was extremely quiet in the womb I'd be lucky to get ten kicks a days, in my heart I felt something was wrong.

by **cheer bear bride** » Sat Mar 13, 2022 10:53 pm

Hey DQ sorry tp hear about your little man having to go through surgery, i had no idea... I guess im not like you in that i post everything about my dd's needs :-8

Like Avril my little one had IUGR and also came premature. She's had lots of obstacles and at 9 months is not doing the things that a 9 month old should do...she cannot sit yet but will get there soon hopefully, they physio has mentioned 'developmental delay' but as avril was saying we wont know a lot until time goes on. We were also told that any other baby would have a 40-60% chance of being IUGR and all the associated problems that come with prem babies

by **avril his wife** » Sun Mar 14, 2022 10:38 pm

You know, I feel a bit of a fraud posting here - you have both been through so much. I still hope that my DD won't have any major SN, though only time will tell. Sometimes I think that it is the uncertainty that is hard - I daydream about the things we might do, not knowing if she will be able. If I knew exactly what to expect, I think I could reconcile myself to whatever that is.

And I KNOW that is silly, no parent knows what lies ahead. I know of children whose profound SN only became apparent in teenage years (schizophrenia) or in toddler years (autism). My next door neighbours growing up had a son who achieved everything he ever wanted to, until he was in a road accident that left him brain damaged. Nobody can control how their children turn out or predict the future. Though obviously we've been given more reason to worry than most!

Cheer bear bride, it is a totally personal question, and don't feel the need to answer it at all, but will you be ttcing again? I had a phase where I thought I definitely would, now I am unsure again. I think that in a couple of years I will have more perspective on it all and a better idea of what I want.

by **mrsclairerose** » Mon Mar 15, 2022 10:29 pm

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by **ScarlettoHara** » Fri Mar 19, 2022 5:00 pm

Dairy Queen wrote:Hi all,
we only found out about DS when he was 15 months old, I was already pregnant with DD thankfully as it was so stressful I think I would have put off ttc.
Now that he's had his op and we are hopefull it's worked he goes to Enable Ireland. I see such misfortunes in there, now I know they all seem like happy little kids with huge hearts but I don't know if I could handle the stress.
What I'm trying to say is even though DS is special needs he isn't bad (in my eyes anyway) and I feel we should be so thankful and happy for what we have and not temp fate.
Am I making any sense?

I completely understand where you are coming from.

I have a 7 year old son and a 4 year old son with autism. I love both of my sons more than any thing in the whole world. Little ds is very difficult to handle and we can have really bad days with him, along with good days. He is in himself a full time job. Big Ds is great with him but does get browned off with him some times.

Had little ds not had autism we would have went on and had another one. That is not an option any more. I feel as if all my time is taken up with the 2 children I have and that we can just about give them both the quality time that they deserve while maintaining some sort of a life for our selves.

If we had another child there would be a chance that that child may also be autistic. To be honest that would be one of the reasons why we decided against it. Not the whole reason, but part of it. Yes of course IF it did happen that we ended up having another child we would love him/her and do our very best for him/her and I would imagine that if it did happen we couldnt ever imagine life with out that child. We would cope of course, because we would have to.

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