Pregnancy worry

lazygal

Apologies in advance, I know others might find this post offensive.

I have a really bad fear of having a baby with a long term disability. I have family members who are carers for their adult child who will never live independently and I know I would struggle to have a permanent child on my hands. I want to get some amnio tests done but I'm not sure if its a good idea. This fear was in my head the whole time during my first pregnancy and when I gave birth I wasn't asking if it was a boy or a girl, I was almost crying with relief she was 'normal'.

I know my own limitations as a parents and I'd be very resentful of having to be a carer on a long term basis for a disabled child. I don't think I have the mental resources to do what I've seen other family members do. Battles with the health service, basic education being a fight and not having the knowledge some day our children will be adults out on their own.

I don't know why I have this fear, its just there all the time. Whenever I have a scan or a check up I get very anxious and I look for 'signs' anything is wrong. I had some issues last time and nearly went mad googling the 'what ifs' of my symptoms. I know anything can happen in life and any child can have health problems which arise, but I have this fear of things going wrong from day one. Like I give birth and suddenly life is a battle, not just for the baby but for me and I don't want to go through it.

Dinkie

I think everyone has this fear - but most people don't verbalise it.

I'm 4.5 months pregnant, and I keep thinking if I should have asked for a Nuchal thingy.... at the 12 week scan. I always thought that after 12 weeks, all the potential issues would be over with. But now on the forums people have moved on to different types of prenatal disability testing... and its nearly scarier.

I have decided not to have amniocentesis, as stress is bad for the baby. If there was an issue I would spend the rest of my time worrying about it.

However, I firmly believe if on the off chance I have a handicapped child, my opinion on this will change completely... and I would do any battle I had to, to give my child any opportunities they need or require... and although you don't believe it, I reckon you would do the same.

Good luck and hopefully everything works out well. x

Das Kitty

This was a huge factor for us deciding to have a second child. What allayed many of my fears/concerns was when my husband asked me about our existing child. If anything happened that left him permanently disabled, how would I feel about taking care of him. The answer seemed so obvious: I'd walk over hot coals for him. There is no length I wouldn't go to.

I think it's difficult to imagine when you're pregnant, because you don't know that person yet as you haven't met.

I'd be like you though. I'm not a born nurturer.

I have the same worry. I don't agree that most people have this fear. I find most people genuinely just take it for granted that they'll have a healthy child. One of my friends,shortly after she got pregnant, was bleating on about how she really hoped her baby wouldn't be ginger and I said, 'just hope for a healthy baby, for God's sake!' She asked what I meant (then I felt bad) as she hadn't even considered the possibility that the baby might have something wrong with it. I grew up with a brother with minor special needs who was very ill as a baby and constantly in hospital, so it's always something I worry about when I think about getting pregnant.

nikpmup

This is a really interesting post. I work with people with severe, profound learning disabilities. I was offered screening scans as I'm 37 - just on the cusp of age-related risk factor. We decided not to go ahead, as a scan can only show an increased risk, not offer a diagnosis - amniocentesis is needed for that, and I won't be risking miscarriage.
If I have a child with a disability - well, I know how bad a disability can be. The people I work with are in the severe end of the scale with regard to behavioural problems, aggression, self-injurious behaviour and a lot more. However - your child is your child, and I know that whatever challenges may come, I'll deal with them. Maybe not very well, but I will because I'll have to.
Your worries are normal but it feels as if you are allowing them to take over. The chances of your baby having a congenital disorder are small - most babies are born perfectly fine, or if they do have problems they are on the milder end of the scale. It is natural that you are scared; you are about to become a parent again, and the worry you're feeling is an expression of the huge amount of love and care you already harbour for your baby. Your worries and stress will only serve to ruin what is a happy time for you. If there is anything wrong, worrying won't change it. Most likely, your baby is fine.
Only you can decide if you wish to have screening done. As you make your decision, consider how finding out will affect the rest of your pregnancy. Would the stress of waiting to meet your disabled baby drive you to despair? Would you decide to terminate? Don't forget, say for example, you found out your baby had Down's syndrome. A person with Down's can have a mild learning difficulty, and might need extra help in school, but otherwise could live out a brilliantly independent life with supports, or may be severely disabled. A screen won't be able to predict that - it'll only tell you the baby has Down's.
Ultimately, it's a very emotionally charged subject, and only you know what's right for you.

Oral Slang

I think it's a very real fear a lot of people have. There is both downs & edwards syndrome within our immediate family. Downs is fine, but Edwards is an awful syndrome that I wouldn't wish on any child. Most don't survive anyway, but if they do, they've no quality of life.

On my 1st child I did ask about nuchal fold, but I would have had to pay & as was pointed out to me, what would you do if there was a problem. My answer was probably nothing, so it'd just stop me enjoying my pregnancy, so opted to just hope all was ok, which it was.

Plays on my mind a lot now for when we have a 2nd, but again I would just have to hope that all is ok. Older now, so the risks have increased, but we'd deal with it if it happened.

wolfpawnat

I think like this and worry about it. What goes through my head is I am only 26, can I really dedicate the rest of my life to a child and not resent it? Will my other child resent me for having to always worry about no2 and on occasion leave him wondering if he is as love? They are such ridiculous worries, and many would think me irrational, but I still think about it. My partner would be gutted, he knows how horrible being a sick child can be. He spent most of his childhood in and out of Crumlin, he had clubbed feet, not a terrible problem, easy fixed, but many of the children around him everytime had horrific disabilities.

I would say more women worry about it than don't but it is almost taboo to talk about it. You fear the judgement of others or even the ridicule for being so stupid to worry about it in the first place.

Mink

I totally understand your fears. I had the nuchal scan thing done privately at around 12 weeks and if a high probability had come up for a serious disorder I probably would have gone for the amnio.

But as an earlier poster said, if something happened to my fella and he ended up with serious disabilities, there'd definitely be no question I'd do whatever I had to to manage

Penny Dreadful

Mink wrote: »

I totally understand your fears. I had the nuchal scan thing done privately at around 12 weeks and if a high probability had come up for a serious disorder I probably would have gone for the amnio.

But as an earlier poster said, if something happened to my fella and he ended up with serious disabilities, there'd definitely be no question I'd do whatever I had to to manage

I think this is the difference between a more "hypothetical" child and your very present touchable, kissable, feelable, cuddleable child.
I'm TTC at the moment and would feel I was pregnant with my child straight away so I am not discounting anyone's feelings towards their unborn when I say that.

Like you OP I have thought about what I will do when (if) I get pregnant. Will myself and my husband decide to go for the tests that can tell you more and can we deal jointly with the impact of that or do we wait for the delivery.
Its very hard.

whatdoicare

I also have this very real fear - my oldest brother has autism and while it's not the most severe form (and I love him dearly) I saw the struggles my parents went through just to get him a basic quality of life and care. He is in his 40's and the struggles still continue and it's a constant battle for them! Everything they've fought for is being cut, my mam has limited time in the day to do anything while he's at respite and my dad worries about money for my brother when he's gone.

I don't think I could handle any of that at all and I'm absolutely terrified my baby will have something wrong with her. I go through all my scans holding my breath waiting for bad news!

I have tried to broach this subject with my own mother and how she managed to cope with this fear whilst having myself and my younger brother but she only keeps telling me I'll have lots of support. This is no good to me whatsoever - I don't want support, I want a normal baby that will grow to be a normal adult. I don't want to worry about who will care for my child when I'm dead or how I'll garner the strength to fight yet another battle for basic rights!

I feel like a terrible mother for thinking like this and I actually feel genuine horror for those who say stuff like "oh, she'll/he'll be my special hero/angel whatever" they have no idea what stress, frustration, fear, worry and heartache they have to face in the future! I hate these thoughts and wish I could make them go away

Sergio

Ya my wife is due in 8 weeks time and we are trying to organize our finances too at the moment.Finding hard to make cut backs on bills plus i need to get onto my back about my mortgage.
Also dont forget the maternity benefit is now going to be taxed as of the 1st of July so thats more money down the drain!

January

I have three children and I never had this worry on any of my pregnancies. None of my children have life threatening illnesses but they do have problems. My eldest child has sub aortic stenosis, some time in the future she's going to need open heart surgery to correct it, she also has a squint in both eyes that will probably need surgery also. My second daughter has Sensory Processing Disorder and needs occupational and physical therapy and my youngest daughter is classed as under weight and has been referred to Temple St to be monitored.

Your child might not have major illnesses/problems but life can still be a struggle even if they don't. Even the most minor of illnesses/problems can become a struggle. You'll worry about your child no matter what.