ttc and disability concerns

[ttcworries]

my DH is desperate for a child. I would like one very much, but I have a (maybe irrational) fear of having a child with a disability or severe health problem. I am 35 which I know puts me in a slightly higher risk category, and have a medical condition which makes premature birth more likely and low birth weight, which can up the risk of CP etc. My condition also means I have low energy and mobility on bad days, and I don't know if I could manage care of a severely disabled baby if it happened. so I've said I am too scared to ttc even though I would love a baby, I am just afraid of my limits. DH is sad but can accept it, the problem is my family who have told me I'm being silly, they will help me with any baby and there's no reason to think I would have an unhealthy child.

AIBU to think you can't be certain of anything so my worries are justified? Part of me wants to take the plunge but the fear is stopping me. I want to make a responsible decision. It doesn't help that all of my friends and family all have perfectly healthy babies and children. I've had such bad luck with my own health that I can't imagine having a healthy baby IYSWIM.

Thank you everyone for the thoughts and advice. Lots to think about both positive and potentially negative.

DH and I have already discussed to a point and he would not be able to handle a child with severe issues so he is anxious too, though less so than me about the possibility (he is big on statistics). Milder issues would be manageable. We would terminate for chromosome disorders. We have friends with a child who has autism and this would be extremely challenging but we would be willing to try and raise such a child and provide the care they needed. If I am unwell, he is always very helpful with what I need - we share the cooking, I do it mostly at the moment because he has a long commute, but he will do it if I'm feeling rough. We share the housework. He is in the process of getting a driving license so we will be more mobile regardless of having children or not (I can't learn unfortunately because of migraine with aura that can hit when I'm concentrating). We have a nephew who DH loves and is very hands on with. We live in an area with good schools close by and discussed the possibility of children at length with this in mind before we moved here. He works from home one day a week. We could scrape enough money together for a cleaner, for example, say once a month if I needed help. So everything seems good on paper, it's just taking that plunge with all the potential pitfalls.

You're not being silly at all, your concerns are your concerns.

Are you able to conceive with your endometriosis? I have endo and am experiencing fertility problems. I have pain on quite a few days of the month however this is managed with painkillers and it doesn't stop me from living a normal life, I don't consider it an illness simply a condition which can be managed. I'm aware that everyone thinks differently though. In what way do you think it would affect you bringing up a child?

If you don't want a child, don't allow yourself to be pressured into it. Your body, your choice.

@Mlou32 My endometriosis causes constant ovary and sciatic pain as well as cramping, nausea, dizziness, hot flashes and fainting due to hormonal imbalance, IBS, muscle aches, constant spotting and chronic fatigue. I can manage the pain with heat and painkillers to a degree but it's the fatigue that gets me badly, I have very little energy and had to quit my day job years ago. Some days are better than others but generally my quality of life has gone down a lot. I am not certain about my level of fertility but I had a suspected early miscarriage a few months ago.

Forgot to add I think it would affect child rearing as I can't lift my nephew for example, I can do it for a bit but not very long, if I have a bad health day I can't leave the house so couldn't take a child to the park or anything... when looking after my nephew (not alone), often I have to have a nap during the day to recover. I often wake up very shaky and weak. I worry about dropping a baby, or not being able to take care of a sick child because I feel unwell, or not being able to manage the walk to school on some bad days. Just a few examples.

@ttcworries I'm not saying it definitely will help but have you tried changing your diet to help with the fatigue? My mum has MS and fatigue is one of her symptoms. Changing her diet and including healthy meat, vegetables, fruit etc and cutting out the crap made such a difference. That and even just a 20 minute walk in the fresh air most days. It all had such a positive impact on her health and well being.

But back to your actual concern.. as I say, it's your body and your choice. Do not feel pressured into anything. If your health is so bad then it wouldn't be unreasonable to put all your effort and resources into looking after yourself as opposed to a baby. I know as women, we can feel pressure to procreate. But there is a wonderful life out there beyond babies.

Sorry to be the prophet of doom, but you can have all the tests going, you can be a healthy mum to be,have all the scans, and think its all ok.
Then things go wrong at the birth, and wham, you have a severely disabled child. That can happen to anyone, did to me.
Life is not impossible with a child with a high level of disability. It can be brilliant and happy, but tbh if you can't cope with it, best not to have a baby.
Sorry had to post this as i and so many people i know live this life.

I don't think you should make the decision based on it being quite 'rare' to have a child with a disability so you'll probably be ok too. When looking at overall population figures, then yes it is rare but there is no way of knowing if it's rare for you. What if it isn't?

My son was diagnosed with a physical disability at birth. Missed on all scans as it's rare so not checked in screening. Not entirely sure but think it's something like 1 in 200,000 rate of occurrence. However for me personally I've learned it's a 1 in 2 chance of occurrence because I'm a carrier of the condition. He's 2 now and if I had known beforehand I don't think I would have taken the risk. I kind of went into pregnancy hoping for no disabilities but naively thinking it's so rare it probably won't happen to me. Being a parent to a child with a disability is nothing like anyone can imagine and it's like living in a different world to everyone else.

It sounds like you are making good considerations though. I wouldn't rely on people saying they will help, obviously great if they do but not everyone follows through or circumstances change and they no longer can.

My sister has severe endo and I had mild - I say had pregnancy can resolve endo and it did in my case. My sister gave birth to a healthy full term and very big baby despite endo at the age of 37. I am surprised endo is linked with premature birth and low birth weights as this is news to me as my understanding was it went dormant during pregnancy due to hormones.

Thank you for further replies. Obviously scans are not the only thing I'm thinking of - I am imagining post natal illnesses too (and injuries later on to a point, but as has been said you cannot prepare for every eventuality). I think it might be a little while longer before I make a decision, but I wanted to start trying before my next birthday at the latest really. That's in autumn, so I have some time to work it out. The issue is me (and DH) going back on forth on it right now. One day I will feel more confident, the next go back to worrying.

I think endo cells are dormant during pregnancy itself but you can still get scar tissue pain etc as the abdomen stretches - I have a lot of scar tissue from my surgeries so this is something I'm preparing for.

Regarding my diet etc and fatigue - unfortunately I already eat as well as possible, I only eat chicken and fish but get enough protein, lots of veggies, fruit is a problem for my IBS so not much. I don't eat too many carbs and been checked before for gluten allergies etc. I only drink tea and water, no alcohol. Bit of chocolate in the evenings.

If you cannot lift a child etc then you would need extra help either paid for privately or via social services declaring yourself disabled if you have not already. Does your family earn enough to pay cleaners and baby support when you need it eg live in au pair or nanny or will you go via a SS claim for a personal assistant?

Would your dh take a week off if you need it? More? Practically speaking if you have health needs you need to plan for the worst case of needing help long term not just once a month.
And the idea of "we will love this baby whatever" if nothing detected prenatally might help...

People with disabilities do have babies and manage but you will need support set up..imagine your worst days every day for the first six months and plan support ....

If you can leave the house some days, how would you get a child to school or their hobbies? If you can’t lift a child, how will you look after a small child that will need constant carrying for nappy changes, feeding etc. What if DH loses his job or you split etc as there’s only one income and children are expensive.

I’d be asking my daughter all these plus more if she was talking to me about having a child whilst physically not well and couldn’t work.

I’d also worry about the child becoming a carer and that for me would be the biggest hurdle to overcome so that it didn’t happen. Having been a child carer, I wouldn’t want that for my own family.

I think the focus should be on how you could cope with a baby/child rather than the health of said baby/child.

I have pcos and have a son who was premature, low birth weight, born via c section and has disabilities due to me getting severe pre eclampsia and I'm pregnant again now.
Like you I suffer from the low energy ect associated with gynoclogical issues and my son can be a handful at times but just like your cats he is so rewarding and amazing.
He is nearly 4 and is only now learning to do things he should have learned at 2
The fact of the matter is I was unlucky and my child has disabilities and I worried about being able to look after him but you adapt because they are your babies and you love them

I have a child with severe and complex need. I had her when I was just 30. There is no antenatal screening for it. in fact, most disabilities cannot be screen for.

I never get people who are TTC with the proposition to have tests and terminate if anything shows up - it just doesn't work like that for the overall majority of disabilities.

My advice to folks who say they could not cope with a disabled child is very simple. There is only one way if making - Don't have children.

Anyone can develop a disability at any time, so a healthy baby may not always become a healthy child or adult.

I doubt anyone has a baby and thinks they may be involved in an accident that is life changing.

I can lift my nephew if I have to, but not for very long, I have to put him down. He is very heavy now at 4, I was fine when he was a baby.

Leaving the house etc I can usually manage if it's necessary, I find the strength. Like doctors appointments etc. So I thought I might be OK. We couldn't afford an au pair or anything.

On bad days I can still do the laundry, vacuuming, everything as long as I can sit down and rest a bit afterwards. Sometimes I get good energy bursts. DH has been confident that I will find the strength and adapt for a child but doesn't mind if I disagree and decide not to do it after all. I thought with careful preparation I could maybe manage but reading more replies here I suppose not. I can't get disability support for my endo as it's not yet a registered disability.

If you can manage to do laundry and vacuuming even on your worst days, I think you'd be absolutely fine caring for a baby with your DH's support.

I can't get disability support for my endo as it's not yet a registered disability.

there is not a list of 'registered disabilities'.

A disability is defined by the Equality Act 2010 and it is not 'what' it is or what name it has but how it affects you.

I had my son at 23. At 25 my husband had to give up work to support us as I could no longer look after our child on my own. I had at the time a below knee amputation and fibromyalgia, plus CFS.

It was the physicality of a toddler that did it for me- I could not physically keep up with him and I was in soo much pain continuously.

When my son turned 4 my husband went back to work and it was still a struggle.

I wanted a big family. My Dh and I decided I was not well enough to do this, taking into consideration my own disability and also the potential of a child having health issues of their own just would have been too much to cope with.

Having said that. He is now 12. My husband and I both hold down full time jobs although I am unsure if I will be able to sustain this but I have now been in work since 2015.

I wouldn’t say it gets easier, my diagnosis’s increase every year and I am regularly in and out of hospital. Just don’t underestimate the long term implications on your lifestyle as a whole, you may need significant help around the clock as I did. Can you afford to do that? Possibly for years?

Also, just to add, my husband does 90% of the house stuff-so the cleaning and cooking and has done so for many many years as I am simply not well enough to do it.

I meant to write 'recognised disability' sorry. I am part of an endo support group and even those really struggling and unable to hold down a job have had trouble getting benefits approved by DWP. Same with my FIL unfortunately who has been unable to work for two decades following a heart attack and fibro diagnosis, he had too contest this in court despite having lost his wife (the remaining wage earner) to cancer in recent years.

I'm beginning to feel I'm not cut out for it which is kind of heartbreaking to think the decision is made for me. Previously I was reading a few resources on parenting with chronic illness and it seemed I could manage but I'm starting to doubt that hope. But thank you everyone for your contributions.

there is no 'recognised disability' either. Plenty of people are severely disabled without having a firm diagnosis.

lots of conditions have a spectrum as to how they affect people. not everyone with the same condition would see themselves as disabled. I have endo, I would never refer to myself as disabled as it doesn't have a huge impact on me...

you’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

You may still manage. I didn’t mean to sound so bleak, we coped as best we could with the hands we were dealt. And you would do the same. And there is never a “right” time to have a child.
My situation is obv very different to yours. I don’t regret the choices I made, I was just hoping to give you a long term perspective that maybe you hadn’t considered.

as long as I can sit down and rest a bit afterwards.

A baby or toddler may not give you that option when you need it... yes they have naps but then if you need to also rest you will need help preparing meals etc... of course dh could fo all that if you going be SAHP. having family or paid care to call on will help unless your dh job is flexible to drop at short notice.
Pip disability is about what you cannot do on your worst day regardless of diagnosis. Does your gp know you on your worst day?