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

[Thefutureissounclear]

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.

I’m so sorry you’re feeling this way. You sound like an absolutely amazing mum.
I want to reiterate a pp, this is not your fault. You trusted what you had been told by professionals x

If you were prescribed this drug for epilepsy or bipolar you are not to blame but the prescriber might be. Your DC might be entitled to medical compensation. It won't make her memory better or help her IQ get higher but it might make her life more comfortable in the future.

Has it occurred to you that the op may have had the wisdom to trust her doctor rather than Google? That is the responsible course of action. You have no idea if she was warned.

@Thefutureissounclear
You are not to blame, this is not your fault, I hope you will come to accept that you are not to blame.
You are a good and loving mother to your precious daughter💗

Read the thread. Then maybe come back and apologise to OP.

What a thing to write.
Is there something wrong with you?

oakleaffy · Today 23:23

MrsSkylerWhite · Today 23:17
Why didn't you ask the GP about side effects of any medication you were taking?
Lots of pregnant women don't take any drugs or drink at all because of the potential risks.
It's just not worth it.

Oh FGS, **, what’s wrong with you?
Most people rely on their doctors to advise them accordingly when they are pregnant. Equating taking prescription medication prescribed by a medical professional to drinking alcohol is just ridiculous.

Alcohol is a toxin too. As are many drugs.

Obviously. And your point is?

Most people trust their doctor to prescribe safely when they are pregnant.

Do you just enjoy giving people a kicking when they’re down? This was in no way OP’s “fault”.

I just cannot believe your lack of sensitivity. I want to ask you several questions beginning with why. So cruel to speak to a suffering parent like this.

You’re a wonderful Mum and you’re lucky to have each other. Sending a hug.

That is a terrible shock for you, Op.
Best wishes for you and your daughter.

I looked up the drug and thankfully it is not to be prescribed to women under 55 now-a-days. You were very unlucky.

I am so sorry Thefutureissounclear.
It really isn't your fault.

Not your fault op. I don't know about the drug but it may not be the doctors who were at fault either.

Sometimes it's more comforting to blame ourselves than to accept that horrible things happen sometimes, to people who've done nothing wrong. Thinking it's our fault makes it possible to imagine things could have turned out differently.

I'd look for help on whether you're treatment was standard at the time, and see a counsellor to help you come to terms with how it's all turned out.

Not your fault.

Just totally this
Try to imagine what you would say to someone else in this situation , would you really blame them?
You have my utmost sympathy but you are not to blame!

I don't know if it helps to hear this, but I hope it does. At least a little.

I'm autistic, and I have co-morbid conditions. My mother is the best person in my life. She is incredibly supportive, she has always fought to get the best for me when it comes to education and healthcare, and I love her more than anyone.

In my case it's most likely genetic, but if tomorrow I found out that a medication she'd been taking during pregnancy had caused or contributed to my disabilities, I would not care. I would not blame her. She wouldn't have known. In my life, all I have known from her is love, and I hope she feels the same from me. I know I can't speak for your daughter, and I would never want to, but from your first post it is clear how much you love her, and how much effort you put in to making sure she has the best life possible and that is what matters.

I wouldn't blame my mother. I wouldn't blame you. If you had known the risks you wouldn't have taken it, you are not at fault for trusting the medical professionals who made the decision to prescribe the drug.

The thing that stands out most to me is that you sound like a fantastic mother. I hope that's something to hold onto when things are hard ❤

Sending you so much love OP, and reiterating what's already been said in the thread - this is not your fault ❤️

I don’t think that’s true? My sister has been back on it since after giving birth and is much younger than 55

Maybe different countries have different guidelines.

There is a support group called Valproate Victims UK on Facebook. You may be able to access support there.

There is so much mum guilt, I was an older mum, nearly 38 when ds was born, high BMI, had a failed induction & emcs. When he was diagnosed with Autism I blamed myself, not knowing at the time that I was actually autistic & there was a genetic link that I couldn't do anything about.

Maybe. My sister is in England, where were you looking?

https://www.epilepsy.org.uk/involved/campaigns/sodium-valproate

This gives some background to the medication and prescribing. It doesn’t matter what medical condition you have, the info may be helpful.

I also wanted to agree with a previous poster, getting an ECHP in place is a must for both of you.

OP I am so sorry that you feel responsible for your daughter's health problems. You really shouldn't blame yourself, it is absolutely not your fault. She sounds a wonderful little girl.

However I can't understand why whoever prescribed the sodium valproate was not also giving you detailed information and counselling about the risks of use in women of childbearing age, and use during pregnancy. I'm a doctor in a specialty where valproate is used (not for epilepsy) and for years we have been made aware of a number of risks over and above spina bifida and cleft palate. In the last couple of years the prescribing has become much more tightened-up and restricted but even 6-7 years ago we were still expected to look at whether valproate was absolutely necessary (sometimes there were no suitable alternatives but we were expected to consider them and discuss the risks, both of changing to other medications and of staying on valproate).
There are pressure and support groups, already mentioned on the thread, who are extremely active and have managed to bring about policy changes regarding the prescribing of valproate so I would encourage you to make contact with them if you feel able to do so. They would be able to advise and support you I am sure.

I wish you and your daughter all the best for the future.

My DH's male cousin didn't take his prescription epilepsy meds. I don't know what they were. He was cycling along side a canal, had a fit, fell in to the canal and drowned. He wanted to pretend he didn't have epilepsy and be 'normal', and died because of it.

This shows how important pescribed meds are to me,taking them I mean.

Definitely not your fault OP. We trust the professionals to advise us.

I had severe morning sickness in pregnancy (maybe HG?) for 2 months. I was given nothing, no drugs. Couldn't even keep water down.

My DD has learning disabilities/autism. I will always wonder if she didn't get the right nutrients in the womb while I was puking for 2 months non stop and this is what caused her issues.

Please don't blame yourself, life is so unfair but this isn't your fault at all, you sound like a wonderful mum and your daughter is very lucky to have you x

Op you didn't know. This is NOT your fault at all.