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.

You've had a long week and a stressful day, now you can finally relax all that pent up emotion is coming out. It's just temporary, tomorrow will be a better day.

Never believe anything you tell yourself after 9pm.

When I filled out the form for DLA for ds1 I was advised to record what happened on the worst days and nights and I got evidence from professionals generally giving the worst examples of how he was affected. Seeing it all written down in black and white was absolutely overwhelming. It sounds as if getting all your information for the consultant has caused you to have similar feelings. You are in no way responsible for your daughter’s SN’s but it’s only natural to question things and reflect on “what might have been”.

You’ve now gone on to “speak” about how wonderful your daughter is. All the joy she brings to you. The things she has achieved and with your love and support is getting every chance to reach her potential.

Ds1 is now 29. There are times when he causes me immense frustration but he has gone on to do great things, he’s an amazing person and I wouldn’t change him for the world. I don’t doubt your dd will be the same.

You are all lovely, wonderful people. Thank you. I want to reply to all of you individually, but I think that might make this thread rather frustrating!

The dogs have settled down on my knee now that I have calmed down a bit. They made me feel so well looked after, the concern on their little faces! (It sounds like we have massive pack-we have two half sisters and they are fab!).

Thank you for pointing out that if the doctors and consultants didn't know how on earth could I have known? Because she wasn't growing well the pregnancy was consultant-led. If they had any concerns then they would have let me know; I wasn't willfully disregarding their advice and did everything I was advised to do.

I am sure I won't be the first parent that the team have met to feel like this, so hopefully they will be able to advise and signpost us with regards to how to find a counsellor.

Thank you all so much xx

This is absolutely not your fault, you took that medication in good faith that the information available was correct and the risk of not taking it was higher.

Also, can you imagine a world where your daughter, as she is, is not in it? I'm willing to bet my house on the answer being no, she's clearly loved, happy and providing joy to her lovely mum who by the sounds of it has dedicated her whole life to ensuring she lives the most comfortable and joyful life she can.

I am going to write these down now. They made me well up again, but in a good way. Thank you x

I'm so sorry. I also took sodium valproate when I conceived DD1(she's 14 now).

I didn't take it for epilepsy, I was given it for bipolar.

I was warned that I mustn't get pregnant, which, at nearly 40 and with PCOS was unlikely, but it happened.

I was given 5mg of folic acid a day and had more scans than usual.

It really isn't your fault. I still worry about DD and feel angry and guilty that I took it, and I had less reasons than you.

Please be kind to yourself, guilt really is a thief of joy. You love her and she loves you, she, as she is, is the child you love.

DD2 died at birth and I carry even more guilt for that, losing her was even worse than the worry over DD1.

I'm on valproate again and the rules have really been tightened up and now 2 independent specialists have to sign it off.

You sound like the most wonderful mum, Thefutureissounclear.

Your little girl is as lucky to have you as you are to have her.

Her conditions are not your fault. You took medication on the advice of a medical professional.

Do please follow up on the sound advice PP’s have given in respect of support groups.

This isn't your fault, op. I'm so sorry. Wishing I could give you a big hug.

Sorry this is the case OP. I beat myself up that my sons have sen needs, I don't know what caused them, genetics or something else? I even wonder sometimes if the fact it was a cleaning product I used during pregnancy or the fact i drank coffee a few times. I will never know the pain you have of knowing 100 percent the cause, but it isnt your fault. I think joining some sort of group is there is one for a class action law suit against the people that allowed it to be prescribed to you, might help to give some purpose and direct your anger and work towards getting compensation for your daughter that can support her through her life.

The NHS actually have a webpage dedicated to this and it is definitely worth speaking to a reputable firm specialising in medical negligence. This may be helpful for you and your daughter down the line. The limitation period is three years and it can take some time to get advice and start preparing a case. https://resolution.nhs.uk/sodium-valproate/#toc-item-4

Your daughter sounds lovely and this is in no way your fault, I think logically you must know this, but it must be painful to think about the "what-if"s. But what is important is the time you have with your daughter now, joyous moments and the love that you described, and happy moments to look forward to in the future. You sound like a truly wonderful mother.

I just looked it up OP, there js a redress claim being proposed for all families affected. Clearly there are many, try and channel your energy and anger into making sure your daughter is included. Actually, reading about it is shocking they knew about affects to pregnancy in the 70s but it seems it was covered up. Id get angry at them OP, not yourself. You did nothing wrong and took the medication in good faith.

OP, I was warned not to get pregnant when on a strong antibiotic for rosacea years ago and it occurred to me later on that women must have had babies with problems and that that is how that was realised. So at some point doctors did not know and were prescribing it to pregnant women.

There is nothing you could have done. And as pp have said, things tend to always look and feel worse at night especially when it’s dark. You sound like a wonderful mum, and you and your daughter I’m sure bring each other much joy and so much love. I hope things seem brighter in the morning.

OP, you did NOTHING wrong. You were prescribed medication by a medical professional and you took it in good faith. How could you have known? We trust the experts. This is NOT your fault. Hugs xxx

This was not your fault. To have been on such a high dose of Sodium Valporate must mean that epilepsy is very dangerous for you.

My sister is in a very similar situation and takes other drugs as well as SV to control hers. By chance her consultant knew that it was dangerous for foetuses when she became pregnant and they swapped her into a different anti-epilepsy drug for the duration of her pregnancy.

It was nowhere near as effective as SV and she spent much of her pregnancy having multiple daily grand mal attacks (which are extremely damaging to her brain as I’m sure you know). She couldn’t be left alone. I remember going to stay and having to stop her repeatedly smashing her head on a metal toilet roll holder while she had a fit on the toilet in the middle of the night. She ended up spending the last few months of her pregnancy on a neuro ward.

She somehow survived all of this and gave birth to a healthy child but then later discovered that this was a minor miracle - the drug she’d been swapped onto was later found to also cause birth defects in many children.

Bottom line is you needed SV to stay alive yourself. Uncontrolled epilepsy can be incredibly dangerous, and it’s no exaggeration to say that without it both you and your fabulous daughter might not have made it. You had no idea, of course you didn’t, and you did NOTHING WRONG.

I hope you will get the therapy you need to forgive yourself x

I took SV as a young teen (childhood epilepsy which I grew out of). Even at the age of 12, the doc. gave me a very serious talk about pregnancy. Every woman of childbearing age should be given the talk. You obviously weren't. So if we are to apportion blame then it's the initial prescriber who is at fault.Not you.

Hi,

I have a son who has Fetal Valproate Sydrome Disorder. He's an adult now.

You are not to blame for your daughter's symptoms. The guilt you feel is natural, but misplaced. In time, you will be able to channel it into determination to help her.

You sound amazing and your love for your daughter shines through. You daughter sounds like she is fabulous, and you clearly cherish and love her.

I think you must have been referred to Manchester so I hope you will meet Rebecca Bromley, who leads the unit.

In the meantime, please contact InFACT which is the Trust fighting for redress from the government and their support association FACSA: https://www.facebook.com/share/16FJnoxaYW/?mibextid=wwXIfr

They are both run by Janet Williams MBE and Emma Murphy. All the investigations that have led to the proposed Redress scheme have happened because of the campaigning of InFACT and FACSA. Tge restrictions on prescribing Sodium Valproate have also come about because of their campaign to change The Medicines Act.

Janet was amazing when I first rang her. I don't think I would be campaigning with them if she hadn't given me the courage to fight.

Please be aware that the government have admitted liability in regard to Sodium Valproate, so you are likely to be wating time if you pursue a negligence claim against the hospital.

There is a news report about the most recent media campaign by InFACT, here: <a class="break-all" href="https://www.google.com/url?q=www.bbc.com/news/articles/cqx9nevdyldo" rel="nofollow" target="_blank">https://www.google.com/amp/s/www.bbc.com/news/articles/cqx9nevdyldo.amp

I know there will more next week.

There are 1000s of mothers who share your experiences, fears, anger and determination. Please do not blame yourself - you are not to blame.

Xxx

@oakleaffy what a lovely way to kick someone when they’re way down already.

Women with serious epilepsy are under the care of a consultant their whole lives. The consultant (the expert) knows all about them, especially when something major happens like a pregnancy. It is their job to offer their expertise to the drug regime for this or any other major physical change. What you are suggesting is that the OP should take responsibility for the failure of the person charged with her care. Why shouldn’t she have trusted them? Epilepsy is so incredibly dangerous, respectfully, i suspect you don’t have much experience of it to ask something like that.

When the medication was licenced in 1973, it was licenced on the basis that women were not to be warned as 'it would cause fruitless anxiety'.

In 2001 the MHRA changed the guidance to tell women they had a risk of a child born with spina bifida but this could be countered by prescribing 5mg folic acid to the mothers. Neurological issues weren't widely recognised until mid 2000s, but only in specialist neurological circles and specific guidance around risks to unborn children were not agreed and published to doctors until 2017. Until then, if mothers were warned then it was not common place as the main driver was to keep women seizure free in pregnancy. Also Sodium Valproate is exceptionally cheap for a drug.

@Thefutureissounclear

You did the best you could with the knowledge that you had at the time. Your intentions were pure, you hadn't lost your way, or were making bad choices and being dismissive of the consequences. Had you known differently you would have done differently, but at that exact point in time, you did the best that you could have done and that's all we can ask of ourselves and others.

Give yourself some grace.

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, @oakleaffy, 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.

Have you applied for an EHCP for your daughter? It sounds as if she would more than qualify.

It's so wrong that OP wasn't warned. Her daughter is only 8 yrs old.
The dangers of birth defects were known for 40 years, according to a brief google.

Alcohol is a toxin too. As are many drugs.

I'm so so sorry.

This is not your fault. You were doing what any responsible parent does, taking your medication to preserve your health. The blame lies with others. Your trust was betrayed.

You're an amazing mum and your daughter's life will still be beautiful. Just different. Not less than. I promise. It will be harder but she has you. And you don't actually know if she could have had autism anyway. One of my children has a plethora of things as the luck of the draw.