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Original poster

My heart has just broken, I caused my daughter's disabilities

129 replies

Thefutureissounclear · 01/03/2025 21:12

My daughter is nearly 8. She has a number of congenital abnormalities, and also has autism (encompassing quite severe behavioural difficulties) and has also been recently diagnosed with hypertonia. She is unable to walk far, and struggles with balance and physical education. I am a single mum, and her father does not believe in any of her diagnoses. Mainstream schools are unable to meet her needs (we have tried 3), and so she is home educated. We haven't got an IEP or EHCP.

I recently found out that the medication I took while pregnant has caused all of her disabilities. We have our first appointment with the lead consultant that specialises in the syndrome on Wednesday.

Throughout her life, we have just got on with whatever new diagnosis came our way. We overcame them, found strategies to help, and she is honestly the best thing that ever happened to me. I love her with all my heart. I am the kind of person that reads everything going, finds practical solutions, and just gets on with it. I don't cry, I don't get angry, I just get on with it. All of a sudden, this evening, it has hit me that I have stunted her life, her future, and her prospects. I am the reason that she struggles in ways she shouldn't have to, and I destroyed the life she could have lived before it even really began. I cannot stop crying, I feel like I can't even look her in the eye tomorrow.

Has anyone else been through something like this? I don't know what to do.

OP posts:
cestlavielife · 01/03/2025 21:14

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HoppityBun · 01/03/2025 21:17

I’m really sorry OP. I wonder if the parents of children affected by thalidomide might be able to help?

DorothyStorm · 01/03/2025 21:19

Who perscribed the medication, what was it for, how did you find out this was the cause?

you could be in a position to claim against the health trust to support your child.

Interested in this thread?

Then you might like threads about these subjects:

Families SEN
ChannelLightVessel · 01/03/2025 21:21

I’m not the same situation, but I have recently discovered I have a BRACA2 pathogenic gene mutation, which makes me at much higher risk of getting breast and ovarian cancer. There’s a 50: 50 chance I passed it on to DD (she won’t be tested until she’s an adult). I am sad about that possibility, but I don’t feel guilty, because I didn’t know about it at the time I got pregnant. I know I will have inherited it from late DF, but obviously I feel no ill will towards him; in fact I’m glad he never knew about it.
You took your medication in good faith, and you are in no way to blame for your DD’s disabilities. You sound like a very loving and supportive DM. I hope you have support irl.

cestlavielife · 01/03/2025 21:22

If it was sodium valproate this was not your fault. The prescribing rules were only changed very recently. Speak to the campaign group for support www.epilepsy.org.uk/involved/campaigns/sodium-valproate

supercalifragilistic123 · 01/03/2025 21:23

Oh gosh that sounds tough. Was it sodium valporate?

You are not alone, you are not the only one who this has happened too. I'm sure you wouldn't have taken it if you'd have been fully informed of the risks.

I really feel for you right now.

cestlavielife · 01/03/2025 21:23

https://infactuk.com/

Pixie2015 · 01/03/2025 21:24

A practical thing that is worth reading and investing time in is a solid EHCP.

Doyouthinktheyknow · 01/03/2025 21:25

I was going to ask if it was sodium valproate? If this was a prescribed medication, whatever it was, you obviously took it under guidance of professionals and it isn’t your fault!

You obviously are a loving mum, try to give yourself a break. It feels a bit like misplaced anger.

swingandtrampoline · 01/03/2025 21:26

This is not your fault op :(

Original poster
Thefutureissounclear · 01/03/2025 21:31

It is Sodium Valproate, and I was on 1500mg daily. I was not told of the risks, but was moved onto a different drug at 12 weeks pregnant, but by then the damage had already been done. I was told after she was born that there was no damage done to her as she does not have spina bifida or a cleft palate (she was born in 2017, so at that time the consultant made me aware that Sodium Valproate came with a "small" risk of spina bifida or a cleft palate). She was an IUGR baby, was induced due to growth stopping, dropped from the 10th to the 1st centile within the first few weeks after birth, and stayed under the 1st centile until she was nearly 5.

I am shaking, whether through anger, fear, disgust at myself, I don't know what.

OP posts:
2021x · 01/03/2025 21:39

Gosh OP hand hold all the way.

I guess the guilt and shame of what you are feeling is inevitable. Please consider some professional help to get through it.

SockFluffInTheBath · 01/03/2025 21:40

Thefutureissounclear · 01/03/2025 21:31

It is Sodium Valproate, and I was on 1500mg daily. I was not told of the risks, but was moved onto a different drug at 12 weeks pregnant, but by then the damage had already been done. I was told after she was born that there was no damage done to her as she does not have spina bifida or a cleft palate (she was born in 2017, so at that time the consultant made me aware that Sodium Valproate came with a "small" risk of spina bifida or a cleft palate). She was an IUGR baby, was induced due to growth stopping, dropped from the 10th to the 1st centile within the first few weeks after birth, and stayed under the 1st centile until she was nearly 5.

I am shaking, whether through anger, fear, disgust at myself, I don't know what.

It’s ok to be angry and scared OP because life is not fair. You have no reason to be disgusted with yourself though, you had no way of knowing, you did not make the choice to do this to your DD. I hope the consultant can do something to improve her quality of life. Be kind to yourself, you’re in this together, and she needs you to be strong.

plart · 01/03/2025 21:40

You have not caused her issues intentionally and you were taking medication prescribed by a doctor that you needed to control epilepsy. This is NOT your fault.

EdithStourton · 01/03/2025 21:42

OP, this is not your fault.
Guilt in parents of children with disabilities is very common. Friends of ours had a baby with what turned out to be devastating disabilities. The mum felt that she was to blame: she had carried this baby, perhaps she had caught a virus etc etc. It turned out to be something that was nobody's fault. It took both parents several long years to come to terms with everything.

Counselling might help you - it's certainly something to consider. And an EHCP would really help your daughter.

Jeeekers · 01/03/2025 21:43

Drs should assume every woman could get pregnant and warn women. Then the pharmacist when you collect it. It was wasn’t not a known risk at time of prescribing, then I guess no way to know.

They say now, don’t even take paracetamol …

ParsnipPuree · 01/03/2025 21:44

Of course it's not your fault. How can it possibly be? However, your dd is blessed with an incredible loving mum, totally invested in making sure that she lives her best life, which with the support she has, she will.

Original poster
Thefutureissounclear · 01/03/2025 21:45

I think partly it has hit me because we had a really good start to the week, she went to a new group and made a new friend, and I struck up a conversation with a mum that was really lovely while we were watching the kids have fun, and life felt really normal for a bit (normally trying to talk to another parent is tricky, as DD either needs my full attention, or I have to guide her through the activity to enable her to join in). Then we had a really rough couple of days, the appointment at the hospital came through yesterday and I made lists of all her conditions, facial, finger and toe markers, behavioural difficulties etc to go over with the consultant, and tonight she has fallen asleep early (normally I lay and read to her until she falls asleep, but it can be 10/11pm before she nods off) and I thought "great, I can sneak downstairs and watch some TV!". I literally made a coffee, sat down on the sofa, and the floodgates have just opened. Bah!

OP posts:
Whyherewego · 01/03/2025 21:45

It's not your fault. You followed advice and guidance from professionals. Please don't carry this guilt.

HolyStyleFailBatman · 01/03/2025 21:46

Absolutely not your fault, you couldn’t have known. I understand your feelings but you have to try to move past them. Guilt will not make you a better parent.
If you can, counselling so you have a dedicated space to vent your emotions would probably be very helpful. Hugs to you. It’s an awful feeling.

Love51 · 01/03/2025 21:46

You didn't cause this.
I know you didn't cause this because if you were given an informed choice you would never do anything to harm your child.
Medical ignorance caused this.
You are not to blame.

MaryP23 · 01/03/2025 21:46

cestlavielife · 01/03/2025 21:22

If it was sodium valproate this was not your fault. The prescribing rules were only changed very recently. Speak to the campaign group for support www.epilepsy.org.uk/involved/campaigns/sodium-valproate

That was my thought - and whoever prescribed the medicine should have known about any implications for pregnancy. Don’t blame yourself OP.

Trolllol · 01/03/2025 21:47

Has a medical professional told you this?. I also thought I caused my dd disabilities for a long while because of medication which does directly cause some of the issues she has. However layer we found out it was most likely genetic.

But that was a good few years later that the burden was taken from me.

ForeverDelayedEpiphany · 01/03/2025 21:48

I'm so sorry, OP. Please don't blame yourself ❤️💖

I was given an off label antipsychotic prescribed for severe insomnia and anxiety after a head injury and post concussion syndrome, and it injured me permanently with a medication induced neurological involuntary movement disorder.

I wasn't given informed consent, and it doesn't sound like you were warned about the dangers of your medication either. 😞 Be very kind to yourself, you were doing the best thing for your situation at the time in your pregnancy .❤️💖❤️

Hwi · 01/03/2025 21:48

You did NOTHING wrong!