Pregnant at 38 and irrational fear of profound disabilities

[namechangenelly1]

I feel horrible even saying this.

I'm pregnant with my first and a wave of absolute terror came over me last week that has sent me in to a spiral and I can't shake it off.

Being 38 carries a lot of risk for disabilities and I'm not sure if I could cope with a child, and subsequently an adult, who was profoundly affected by a disability. Particularly genetic disorders that make people violent, unable to toilet by themselves, unable to communicate or ever live without constant care. My age increases this possibility apparently, particularly with profound autism and learning disability.

Please don't think I'm in any way saying disabled people shouldn't exist, I'm just not sure how to get out of this thought process and see the rationale.

I'm not really sure what I want from this thread, but I needed to get it out.

Not sure where you are based but some NHS trusts have specialist midwife’s who help women with anxieties during their pregnancy. Speak to your midwife at your next visit or if you feel you can’t wait until then then give her a call to explain your worry’s and see if this is something your trust offers

Agree with the pp recommending an NIPT. I had one privately at 10 weeks when I got pg aged 41. It came back with a 1 in 2 chance of T13 (very severe disability, usually incompatible with life). I had further testing which confirmed it, then I was able to get a TFMR within a few days. I read up on the syndrome and I was like you, there was no way I wanted to deal with a child with severe disabilities, and there was a high chance of it not even surviving until birth anyway, so much safer to terminate. So definitely get any private testing done available to you. If I'd waited until the NHS free combined test, I would have been further along in the pregnancy, which would have made the termination more complex (and possibly it might only have been possible through actually giving birth - I had it done early enough to have a surgical, which was fairly straightforward).

When I was reading up about test results, I saw plenty of forum posts where women had the same diagnosis but much younger (20s) so although age increases the risk, it's still a bit random and people do get diagnosed at all ages.

I also know of some women who have had very healthy pregnancies, and their babies have ended up with severe disabilities (eg cerebral palsy) due to having the cord around their neck at birth, or similar. So a good set of test results won't mean you're in the clear.

I was lucky enough to get pregnant again (naturally) and went on to have DD2 aged 42, and she is very healthy and a happy toddler. I had the NIPT with her and would have been prepared to take the same action if the test results had shown a high risk.

I had my second healthy baby at 38. To an extent, I also felt anxious about the ‘what ifs’ but managed to put the thoughts to one side and enjoy the pregnancy. Try to chat your feelings through with your midwife and take comfort in the tests and regular checks you will be having. Congratulations!

I felt similar. I hadn't been too sure on having children and didn't think I'd cope at all with having a disabled child or any form of SEN.

But I do. And actually I'm bloody good at parenting him. It's difficult but he's also great, much like any other 4 year old. Though in our case he's only just getting the hang of walking and although social and expressive he has no verbal communication.

For context, I had disabled DS (genetic disorder) at 34 and totally normal DD at 37.

edited to add - I did have genetic testing via CVS with DD at 11 weeks pregnant. I wanted to be as informed as possible about any risk

If it's really important to you, then I would pay for nipt screening. It's not diagnostic but it's the most accurate non invasive testing. You are at higher risk, you know that, but the risks are still small.

I had my son at 19 and he has profound autism with all the symptoms you listed. I then had my other son at 30 and no disability with him. I know plenty of people who had their children much later than me and they are fine and heathy. I wouldn’t worry. Speak to your midwife about your anxieties.

Risks of cerebral palsy?! CP has very little to do with age, as far as I'm aware...it can occur from oxygen starvation/brain injuries that can happen at any point. My own CP was caused, I believe, when I collapsed a few days after birth (I was born at 28 weeks).

While yes, the chances are higher than they would have been in your 20s. There’s still far more chance of having a healthy baby than there is of having a child with a disability.

my sister in law had my nephew with Down syndrome at 39 (probably not what you wanted to hear) but then went on to have my second nephew at almost 46 and he is completely neuro typical. So it shows that just because you’re older doesn’t mean anything will happen.

Being 38 carries a lot of risk for disabilities

While the relative risk of genetic abnormalities does increase with maternal age, the absolute risk is still very small. Your worries are out of proportion, definitely worth talking this over with your midwife. FWIW I had a baby at 40 (completely healthy) and a pregnancy at 45 which didn't work out but the reasons for that were unrelated to my age. A full genetic screen was done on the baby and there were no abnormalities.

Of course there are many conditions that can't be identified prenatally, there can be non-genetic problems, and a healthy child at birth can become ill in the future. That's the gamble we all take irrespective of our age when we choose to have a child. Honestly 38 is a very normal age to have a child, try to keep things in perspective.

I had my DC at 36 and 39. DC1 is autistic (although this obviously wasn't immediately apparent). I too worried a lot about my age being a factor for various complications and was so relieved to have a Harmony test privately which essentially gave us the all clear.

I wish I had paid closer attention to the risks of birth injuries as DC1's delivery was long and traumatic and was, at least to start with, thought to be a contributing factor to the difficulties she later experienced, but which eventually came to form the basis for a diagnosis of autism.

Please tell your GP or midwife and get as much support and reassurance as possible in the form of testing and perhaps some prenatal counselling. DC1 will likely need some support into adulthood, albeit not with feeding and personal hygiene, and education has been a desperate affair since the start, but you really do find that you cope and thrive together in new and unexpected ways.

Its mentally challenging. I was expecting my one and only dc when I was 40. We paid for trisomy tests at 10 weeks (MaterniT21 to give us time to figure things out.) Turns out we need not have bothered. I panicked throughout my whole pregnancy though and looking back I'm so sad I did. On paper, I had a perfectly glorious pregnancy, but never let myself enjoy it. Ds is a totally normal 9yo. It's easier said than done, but please try to relax and enjoy

Whether you are 18 or 48 there's a chance of disability, I'm not going to lie but it is a. Low and b. You cope. I have a disabled dd and a profoundly disabled dsd, life is great!

Hope for a safe birth at this stage and stop catastrophicalising (which I can't spell).

There's always a chance of something going wrong or not quite to plan.

I was 39 when I had dc 2. Pregnancy was breeze, birth was a doddle and dc was an easy baby. Only issue was dc was under the 10th centile at birth. We had scans every 2 weeks until dc was delivered at 37 wks. Completely happy, robust and perfectly chunky toddler now

I had my DD at 40 after years of trying and several miscarriages. I hadn’t realised how much anxiety I was holding until I went for my second scan (at the geriatric pregnancy unit!) and burst into tears on the bed, having torn my DH a new one on the way there for nothing in particular.

We’d already had The Conversation and decided to proceed with the pregnancy regardless, but I was terrified nonetheless. The results came back entirely positive, same risk as a 25 year old.

At the same time a friend of mine, similar age, had a completely ‘normal’ scan. She was blindsided when her son was born with Down’s, completely undetected. He’s the light of her life.

What I’m trying to say, OP, is that the fear is normal. And frankly appropriate, because it’s stupid to pretend the risks aren’t real as an older mum - they are. But up to a certain point you still have options. In the end, if you’re happy to be pregnant and want to be a family, your baby is a gift and you will love them, whoever they turn out to be.

Thanks everyone. I think I will go for as much screening as possible as soon as I can.

How far along are you OP? My first pregnancy, after 4yrs TTC, was also at 38. I paid for the NIPT at 10 weeks which showed Patau syndrome. Like a poster up thread, I too chose TFMR. Disabilities can happen through causes other than genetics though.

I agree with others, to please speak to your GP or midwife about your anxieties. Its normal to have worries in your 1st pregnancy, but getting some support would be beneficial for you both. The high cortisol levels you produce from the stress isn't good for baby either x

Firstly, congrats, and don't worry about asking on here, everyone has the same thoughts at times, and as OPs have said, talk to your midwife / doc and get some re-assurance. You don't say how far along you are, and whether you have had all of the tests, but these are worth doing. For what it is worth, in my twenties, I had to go through full labour with my DS1 because it was picked up late (at 20 weeks) that he had anencephaly, it was picked up late because I did not know I was pregnant (I was on the pill), so had not had many of the scans that would have been on offer. Anencephaly is a severe form of spina bifida, and it is not compatible with life. There was a very low period, but I then went on to have 2 more children within a year with no issues other than being monitored fairly closely and being on ten times the normal amount of folic acid, I threw my hat into the ring twice more in my late '30s (37 and 38), and had a 1 in 4 chance of downs, which I could almost remove the risk if I had the amniocentisis test. To say I was not keen is an understatement, but I was persuaded by OH, medical staff etc. and I am glad that I did. As it happened, both were well and healthy, and are now 20 and 19. In my experience, you never stop worrying until the baby is in your arms, but once you have done all you can, then try and have the best pregnancy, and the best birth, and try not to worry too much. XX

I understand your worries. We are told by society (and there's often a lot of it on here too) that anyone older than 35 is at such greater risk.

But what you just have to do is try so hard to just think that if you worry it actually won't change anything. There are screening tests etc which really do pick up a lot. And further tests available if needed.
Focus on having a lovely pregnancy with your beautiful baby at the end of it.

I had my 2nd at 39 and she is perfect. Good luck to you.

Children can be born with no disabilities, then something comes around and then this has to be considered.
A young child can fall and hurt their head and it can be an irreversible issue, or similar.
You cannot control everything in your world!

Had my baby at 39 no issues

I absolutely understand your nerves, but you’d be having the same ones if you were 25. It’s a natural worry in pregnancy that something might be wrong. If it’s consuming you, talk to someone.

I have two with cerebral palsy, they are absolute joys. Parenting disabled children is not always doom and gloom. It’s hard to understand that until it happens to you, and of course there are much more debilitating disabilities than my two have so I can’t speak for everyone, but I suppose my point is having a disabled child isn’t the end of the world. For me the worst part is always wondering what the future will be, they’re only two so I have a lot to learn.

I would say that “I’m worried I may give birth to a shark” was an irrational fear. Worrying about the risk of abnormalities when pregnant at 38 is a perfectly rational fear. I had my last child at 42, and it was an ever-present thought.

Knowledge is your friend, though. Better testing would have helped put my mind at rest. Before you have the tests, though, I’d have a really good think about what your options and choices would be for the various results. I think it helps to have those discussions before you get put in an emotionally charged position. Those opinions may change, but have the discussions early.

good luck, and congratulations!

Had DC2 aged 38 2 years ago. All fine x

I had my DC at 36 and 39. I worried - although I don’t think excessively - about my age with both. DC1 was fine. DC2 was given a higher chance of DS on the combined test (I suspect because of my age) but the harmony test was negative. He was however then born with a very rare illness which had absolutely nothing to do with my age. It is a random lottery, but chances are everything will be fine.

There are no guarantees unfortunately ..ever.
Your age only slightly raises risk, and while having the tests rules out the common trisomies and a few other things, the remote but real possibility of having a child with disabilities is there for every pregnant woman.
I was 29 having my DS2. Tests were fine, the baby wasn't. (weak muscle tone, then physical and congnitive delays and autism) He's awesome though and has done wayyyy better than we ever expected, but he's never going to leave home (and I'm fine with that)

I work in the special school my son attended and very few of the children have disabilities that were immediately obvious, other than a couple with Downs' syndrome and HIE (basically birth injury CP)... the rest emerged over time.

The odds are massively in your favour of not having a child with disabilities, but I have to say... it would be ok anyway. Trust me, your love for your child gets you through.