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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:
EdithStourton · 05/03/2025 19:24

OP, I am so pleased that the consultant was so good.
Definitely get advice about an EHCP. This should then enable you to find her a suitable educational setting, which will give you the chance to get a part-time job or even just have a bit of time to yourself (we all need that).

TracyBeakerSoYeah · 05/03/2025 19:34

As pps say it's definitely not your fault.

However it still makes my blood boil that sodium valproate was still being prescribed as my consultant back in 2012 warned me about the risk of birth defects & advised not to ttc whilst on it.

So if it was known then why was it still being prescribed?

theartofhappiness · 14/03/2025 23:00

Woman's hour covered the Sodium Valporate issue today for anyone interested. Takeaway points for me were that the fight for justice is very much ongoing, there was deliberate concealment about the effects by the government and medical bodies, campaign group are still fighting to get support for children and families affected.

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pipthomson · 22/04/2025 22:32

don’t over think this
if you think you owe amends Just accept her as she is and be the best mum you can
you did not intend to injure her her life is not less valuable because she has medical conditions try to enable her to have the best life possible
stop punishing yourself

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