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.

Tricky. On one hand, no one should talk you onto having a baby, and severe disability is a possibility. On the other hand, severe disability is very rare. Milder disability is common, but there's a huge difference between parenting a child who needs
only hearing aids or the occasional physiotherapy appointment to one who is totally dependant. My approach was to treat severe disability as a "black swan" event - and event with a probability so low that it should not be factored in to decision making.

I think you are being really sensible. Friends and family may not always be there to assist with looking after a child. Likewise no relationship is guaranteed and having a child puts a strain on most relationships at times.

Will your health condition get worse? Can you work on bad days?

@Loopyloopy

Thank you, that is reassuring.

@IceCreamAndCandyfloss

My condition is endometriosis. So not curable and it can get worse, but can also get better. I am doing OK with treatments atm. I am an artist and work from home, some days are bad with brain fog and pain but mostly I can get what I want done. DH has a stable job on enough money to support us. We are on our 12th year of marriage.

I had both my children after the age of 35 and they are grand. It's understandable and responsible to contemplate these things, but I don't think you should not do anything just in case it goes wrong; the chances are everything will be fine and it will be the most wonderful thing you've ever experienced. If there are problems, you'll find a way to cope with it between you and your husband.

FWIW Op, I was the same. Both of my siblings have/had serious medical issues. Both the same condition but somehow doctors are saying it’s not hereditary. One sibling passed away from heart failure at 20, other one had a heart attack at 18. I was terrified, I have had my baby & he is perfect! Absolutely nothing wrong with him. But I was seriously considering adoption. Have you thought of this?

Is your condition hereditary?

I too would suggest adoption or fostering. You cannot guarentee a child with out probs or even if you find out you don,t know what level. Better look after a child already alive then abort one.

@Lipsygirl my endometriosis is not hereditary as in my mother didn't/doesn't have it and no one else in my family but I am aware it can be to a point, so a daughter of mine might get it. Luckily it's manageable and I would know how to advocate for a child should they show symptoms.

Regarding adoption or fostering, I am considering these avenues but am also aware that adopting a baby can come with its own problems and medical issues, for example drug withdrawals if the mother was an addict during pregnancy etc. I wouldn't feel comfortable with contacting an agency and telling them I can only handle a healthy child, it feels disingenuous. By 'healthy' I don't mean 'perfect' obviously. I would love to help a child in need, I'm just considering my limitations and how much I could manage.

P.S. This is not nearly the same as a child obviously, but I foster cats and kittens and many of them have had serious trauma issues or health problems. I love to help them and it's rewarding to see them improve when they do, but very draining as well, so I'm being careful with my decisions here.

There are no guarantees ever of having a child with no issues but adoption or fostering are much, much more likely to bring children with issues into your family. These could be physical, emotional or both.

Have you actually discussed this seriously with your gynaecologist? I worked in the field for many years and don’t recall pregnant women with an endometriosis diagnosis being treated differently or as high risk once they were pregnant. Obviously it can cause difficulties with conceiving in the first place.

Discuss further with your DH and then with your gynaecologist if you want to go ahead but be aware nobody can give you any guarantees.

Fwiw and I know all cases are different.
I have endo and pcos, had 5 laps do far but it just returns . I've had 3 healthy babies. All born from. 39+4 to 40+2 weeks and all between 7lb and 7.6

No extra care needed during pregnancy.. I've never heard that you may do tbh. But I'm prob wrong.

@MatildaTheCat officially they wouldn't class a woman with endo as high risk unless they found other problems, but it does generally raise the risk of premature birth and low birth weight, plus stillbirth, haemorrhage prior to birth, pre-eclampsia, placenta previa and c section. (I would be requesting an elective c section anyway as I have vaginismus).

@JustBecauseItWorkedForYou even anecdotally that is heartening to know, thank you. I had my second lap last year. Congratulations on your children :)

Does your dh want any child even one with issues? Would he want to terminate for chromosome disorders? What would he do if child turns out to have autism or other issues undetected pre or post natal as newborn ?is he happy to be hands on if you are unwell and even if you aren't is he going to be a committed parent? will he maybe cut his work hours to be there...or earns enough between you to pay a nanny cleaner etc? It s good you having conversation. No one can guarantee anything with a child. And your friends with ":perfect babies" may yet face disability illness mental health or other issues with their kids down the line. .... you have to be prepared for anything.
I am sure you can do this if it is what you both want...equally if you dont want dc that s ok (but if dh really does that could be an issue).
dont decide based on what anyone else thinks only you and dh....

Hi OP, in this situation I would go for it. If you have a supporting partner, who will happily do more than his share (if necessary) of night feeds, and a supportive family close enough to help out.
I have fibromyalgia, hyper mobility syndrome, IBS, PCOS, and probably endo as well (although I didn't have the laparoscopy to confirm it). I too have days of pain and fatigue, but generally manage fine. My mum was fantastic through pregnancy and since, she lives very close by so was always about to help me if need (I developed bad SPD and could barely walk) Pregnancy/birth have actually improved all my previous genealogical and IBS related symptoms. I opted for a ELCS, DD came slightly early at 38+5 weeks, and was on the smaller side of normal (6Ib 4). Recovery was straightforward and DD has no issues (she's now 2.5) There are no guarantees in pregnancy or birth, but it is doable even with conditions that can be debilitating. I would struggle more if my husband wasn't as understanding as he is - he does the vast majority of night wakings as disrupted sleep is one of the things that really causes flare ups for me. As I said previously, it really does depend on the support around you.

Without knowing the details of your condition and how much it increases the likelihood of having a child with disabilities I would say, in general, you are much more likely to have a child with high needs of you Foster or adopt. Most children in care have had a very difficult start to life and have been born to mothers who have chaotic and very difficult lives.
What has your GP said about your likelihood of a healthy child?

To be honest I think most people wouldnt have a baby if they knew it would be disabled to the point where it didnt have a good quality of life.

You can always get private scans and tests that test for more than the NHS does. That would rule out more disabilities and maybe you could get one done earlier so you wouldn't be faced with any tough decisions late in the day.

I'd say though disabilities are very rare, out of all the people I know that have had babies I only know one that is disabled, which was down to a fuck up by the midwives not doing enough manual tests when their monitored equipment was faulty, which is quite specific and was also avoidable.

Fwiw OP I have endo and have a very healthy baby. Was told she might be small for other reasons but she came out at nearly 9lb. If you have family that understand and will help then I would go for it.

Disability (covering a wide range) or special educational need is not that rare ..
Department for Education (DfE) statistics published last year (2016) show therearemore than 1.3 millionchildreninEngland- 15% of pupils - identified as havingspecial educational needs. Of these pupils, 1.1 millionarein mainstream schools rather than special schools.

Every county has at least one SEN school with kids with learning disabilities. Every mainstream school has a small proportion of kids with disabilities... a small % with physical disabilities go onto win Paralympics. Etc.

Of course there is chance of disabilty or accidents or illness...and yes it s the minority. But it certainly exists! but mostly you take the risk when you decide to have a child. Chances are good the child has no significant issues .... but if you dont wan t to take any risk then dont have a child...

I have one with a syndrome complex LD issues / one with medical health issues / and one (last born so when I was late 30s) nothing so far. No regrets.

You cannot test prenatally for every single rare condition. But then they are that....rare.

Every woman fears for the health of her baby and 12 and 20 week scans can be vary daunting.

I know I was very apprehensive about a scan potentially showing some kind of disability or abnormality.

There are tests that can be done to near enough rule out any chromosome abnormalities so you can do that for reassurance too.

As has been said though, you could have the perfect pregnancy, the perfect foetus but then something happen at birth, a complication of some sort, that can lead to life long problems for the baby.

There’s just no way of knowing.

But even for those of us who have perfectly healthy children there’s no telling what’s around the corner.....my 6 year old could be hit by a car and be paralysed tomorrow and as parents we just want to love and care for our children no matter what happens.

It’s a lottery really.

You are being very sensible to consider all of this and if you have a genuine fear (as opposed to just nature anxiousness) regarding the thought of not having a perfect baby/child then it probably is best you don’t TTC as you have already recognised that any complications would be beyond your limits of what you think you could cope with.

I’m glad your husband is being supportive. It’s a decision for you and your husband to make and not one that your family get a say in.

There is no guarantee that you will get pregnant easily. There are no guarantees with ttc, pregnancy, childbirth or the health of our children. If you want to try for a baby, maybe some counselling to help with your anxiety would be a good place to start.

Good luck with whatever you decide.

I don’t think there’s anything wrong with knowing your limitations. Whilst some couples will say they want a child no matter what the problem, many (like myself and my partner) discussed it and decided that we couldn’t handle a severe disability so we made the decision to have tests during pregnancy and had planned to terminate should a very serious disability arise during those tests. I can’t say if we would have 100% proceeded as you never know how you feel unless you’re put in that position but that’s what we planned to do. Have you had this discussion with your partner?

But yes just following on from what a previous poster said you just can’t plan for something happening during the birth which could mean a life long disability. My god-daughters baby was without oxygen and took 12 mins to resuscitate and the first 6 month has been challenging but she’s in a much better position than they ever dared hope. I’d also recommend some counselling prior to making any firm decisions