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.

1. No one ever had a grand mal seizure because they didn't have a glass of red wine. This whole "loads of women don't take any drugs when pregnant" guff ignores the reality that some women will die or be left disabled without their medication. You wouldn't tell a diabetic mother-to-be to stop her insulin, right?
2. It's the responsibility of the doctor to advise the patient. That's why they spend years at medical school.

Please do not blame yourself. You would not have taken it if you had known.

I was on this medication and one day it was changed and when I asked why they said they "don't prescribe it to women of child baring age anymore unless on soild contraception or no chance of conceiving".

You have been failed by the medical profession and you have not failed your daughter.

That poster has form for being an utter twat.

Why doesn't she have an EHCP?

I am probably the reason my teenage son has gone blind. Unless his case has arisen spontaneously, I must be a carrier for a genetic condition that causes significant vision loss usually in teenage years. It passes down the matrilineal line. I had no idea as it didn’t emerge in previous generations.

Do I blame myself - no. There was no way I could have known. I didn’t knowingly take a risk - DS is the victim of unknown factors. He is amazing and whilst I wish this hadn’t happened to him there is nothing I could have done differently.

I am going to take issue with one thing you have said. You did not cause you DD health issues - the medication caused them. A medication you took in good faith based on a catastrophic failure by professionals to ensure vital information was provided to patients. You made the best decision you could based on the advice of experts.

What a vile, unhelpful comment. I am stunned at your insensitivity - what is wrong with you?!

OP this isn’t on you, you would have never taken it if you knew there were such risks. Thousands of women take all sorts of medication throughout pregnancy, myself included.

I wish you and your daughter well, please don’t carry the blame for this, it’s not your fault.

Wow what a breathtakingly cruel thing to say. You know very well what your motives were for saying this…. Unbelievable

Sending hugs.

I'm a Sodium Valporate baby from long before it was even well known in the media. I have Epilepsy, ADHD and possibly Autism as a result but ultimately this is NOT your fault. Just like it wasn't my own mum's fault. You have a condition that needs medication and you weren't wrong to keep following the advice of professionals. I didn't know until my own diagnosis of epilepsy that the medication my mum had been taking while she was pregnant could cause epilepsy and that was only because I was told I couldn't take it while I'm of childbearing age unless we couldn't get my seizures under control.

It has taken a very long time fore the medication to be researched thoroughly and even longer for the results of that research to become known and longer still for the NHS to act on it.

This is not your fault in any way, shape or form.

Oh, do kindly fuck off.

Taking medication is not a choice. I don't know about the OP but my own mum would have probably died if she hadn't continued taking the medication (therefore, I wouldn't be here now to tell you to fuck off), as it was her seizures were so severe I was born several weeks early.

Don't judge or talk about shit you know fuck all about.

Please be kind to yourself. You weren't the one responsible for this and you did what you were told you needed to do to keep you healthy so you could parent your child. You clearly care about her a lot and are moving heaven and earth to care for her.

It's not your fault. You didn't know. You can't mitigate a risk you weren't aware of.

It's not completely the same, but my daughter has a congenital heart defect, learning difficulties and hypermobility. When she was a toddler I started developing a variety of symptoms and now 9 years later I've found out I likely carry an autosomal dominant gene mutation that has been linked to her specific heart defect. If I have the mutation there's a 50% she inherited it and I was just fortunate enough not to get a heart defect.

I've spent the past couple of weeks swinging between blaming myself and then reminding myself that it can't be my fault if I didn't know.

You will get through this. It's worth looking on Facebook to see if there's a support group for her condition.

Also for what it's worth, gymnastics is really good for both hypertonia and hypotonia. My daughter has mild hypotonia and started gymnastics 4 months ago. There's been such a huge change in her core strength that paediatrics commented on it. My daughter likes gymnastics because it's relatively low demand and she's just accepted for who she is. It also improved her behaviour because it gives her a good amount of sensory input. If you check your local clubs they likely have home ed sessions. Some clubs also run SEND gymnastics as well

I promise you will get through this

You didn't cause the disabilities OP the medication you were prescribed did the damage.

Your body provided a warm nourishing place for your baby to grow, that is an amazing thing.

You did everything you could to keep her safe and you did keep her safe.

@Tryinghardtobefair has summed it up perfectly, you did not know. All generations have done things on good advice that we now know are wrong, but we didn't at the time.

You could sue

Poor you. Please don't let the guilt consume you, because you've done nothing wrong and so shouldn't feel guilt, but you will, so get help to process that.

In a practical level are you getting good pip? Have you thought of making a legal application to basically sue hospital re the old consultant , or the health trust. Plus please chase the echp asap and try and also get her into a school that can support her, if that would help both you and her.

I thought you were going to say Valproate.

https://www.bbc.com/news/uk-england-london-21523434.amp

The risks were known long before your DD was conceived, so I would advise taking legal action. It is completely unacceptable these risks were not communicated to you.

I had to take a cocktail of meds when pregnant with DS. They weren’t officially approved in pregnancy, more ‘we don’t think they’ll cause any harm but can’t be certain’. I had no choice as the alternative was much worse. There hadn’t been adverse effects to DS but there could’ve been, and it wouldn’t have been my fault. You can’t blame yourself

I'm really shocked you were prescribed SV without any warning. my friend had to be on long acting contraception to be prescribed it even though she is a lesbian so no risk of accidental pregnancy. I thought that was standard for women of child bearing age.

I have a friend with 3 kids with sodium valporate syndrome although they are less disabled than your lovely daughter. The families are still fighting for justice and compensation (her kids are aged between 19 and 30 now).

Please look after yourself and don't blame yourself even 1% for her disabilities. Try and reach out to other families whose kids have been affected by SV and like other posters have mentioned look into a claim for medical negligence.

Just joining others to say please don't blame yourself. You absolutely did what what you should of at the time given the medical advice you were given.

OP, I haven’t made it to the end of your posts because reading what you have said about your daughter in this one has made me cry. She sounds like such a wonderful child, and that is reflected from how she is cared for. I hope to become half as good a mother as you are. I just wanted to say that because your words really hit me, in a positive way.

You should have been warned about the dangers of getting pregnant while taking sodium valproate. The risks have been known for many years. This is not your fault x

@oakleaffy have a day off pal.

Blimey, try reading all the OPs posts and thinking. She’s said her consultant said the drug was ok to be on.

From reading the other posts it should be fairly obvious to anyone that the knowledge about this drug has changed recently.

OP, I’m a midwife and left the nhs in late 2017. I knew/my trust knew about the issues with it by then and moved to getting women off SV in pregnancy, probably happened a year or two before I left. But iirc my hospital moved to this stance before official, national advice due to a baby whose mother was on SV having a severe birth defect. It led the obstetrician to do a bit more reading and they realised that there was evidence saying the drug wasn’t safe but this hadn’t yet changed national practice. This delay imho was unacceptable and I guess the basis of the nhs admitting liability. It’s certainly not your fault and quite probably not the fault of the individual doctor who said to you it was ok to take. I know compensation would not make up for this but it could certainly help make life easier for both of you.

@Thefutureissounclear enjoy your dogs - they are amazing animals. I was upset the other day and one of them came upstairs to find me while the other waited at the bottom looking terribly worried (they arent supposed to come upstairs). So we had a group cuddle.

Just to reiterate what I said upthread, this is NOT your fault, and get your daughter an EHCP. And if you feel up to it, join the class action. Money doesn't make problems go away, but it makes them much easier to handle in a practical sense.

@ADHDspoonie Have you ever told your mum? Whether you have or not, do you regret your decision?

I have something. I'm not sure whether I should tell my mum or not., and I know your mum is not my mum, but just wondering how your mum has reacted if she does know.

I had the video call with the consultant this afternoon and she was absolutely wonderful. I cannot praise her highly enough. We have a hospital appointment on Friday, and I feel that both my daughter and I have been validated, listened to and cared for. It is a horrible thing to have happened, but there are good people out there trying to help, and that makes a huge difference.

Thank you all for your kind words. I love my daughter unconditionally, I couldn't imagine her being any other way than the way she is, and she makes my life complete.

How sad. I remember a lady whose child's disabilities were caused by SV. She and some other mothers are campaigning for better information to be given to women of childbearing age. I was on something else twice but both times, the first thing a doctor said to me was there's a risk of disability and they recommend not to have children