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 were not told of the risks. The prescriber is at fault here, not you.

You absolutely didn't cause this.
You didn’t know and would never have intentionally taken something that you knew had even a slight chance of causing disabilities.

Your daughter will bring you so much joy as well as the difficult times.

She will definitely meet the criteria for an EHCP so channel your energy into getting one and getting her into a special school where you will meet other parents in similar situations and she will find some friends.

And some therapy for you x

Allow all of these feelings to come, recognise them, put words on them, feel them in your body and then allow them to go. Repeat that as often as you need to... they are real, but let them go. The only thing you have is this present moment, you are safe, your daughter is safe, you are loved, she is loved. Wrap yourself in a blanket and just allow yourself to breathe and then let go - all of them. Allow yourself to feel compassion for your self and love.

You are right to feel angry and frustrated and devastated, anyone hearing your story would feel immensely frustrated and sad for you. This is not your fault, you and your DD are the victims here.

You did what any loving Mum does, you make the best choices you can with the information you have at the time.

This is, in no way, your fault. You're not a psychic who knew the guidance would change years later.

It's absolutely clear with the way you speak about your dd that you only want the best for her, and that you adore her.

I'm so sorry you're feeling this way op 💐

@Thefutureissounclear , medic here. This is not your fault. You did not cause your daughter's health difficulties.

You were prescribed a medication - likely for a significant health issue given the medication you mention. You weren't given full information about the risks of that medication, some of which are only now really being understood. You made the best decisions you could with the information available to you.

You might want to consider asking the consultant whether the clinical decisions/recommendations to continue the medication and then to switch at 12 weeks were in line with what was considered 'best practice' at the time. Did the doctors advising you give the best care they could with the information available to them, or should/could they have done something differently that could have led to a different outcome?

You have given your daughter life, love, safety, happiness and support. The harm caused by this medication was not caused by you, and this is not your fault.

The consultant you speak with might be able to link you in with psychology or counselling, because there's a lot of mums (and some dads) who are going through similar experiences, and services are recognising that parents of children harmed by this medication may need help to process what's happened.

You didn’t do this. You weren’t aware and this wasn’t intentional. It’s not your fault

Oh, my lovely. This is not remotely your fault. Not in a million years. X

I'm so sorry. You sound like you are doing an amazing job. I hope you can get some help coming to terms with this news. If you can muster the strength and time please do apply for the EHCP. The application doesn't have to happen through a school - you can apply directly to your Local Authority. It's not easy but there's a lot of free advice out there eg Scope.

There is a chance the autism and comorbid diagnosis is actually genetic. Can you ask the consultant for further tests.

Chateau's post above is very wise - recognise and name the feelings, observe them, but let them go.

You are not at fault x

Thank you all so much for being so lovely. I really needed you all tonight, thank you. The dogs keep licking my face and bringing me their teddies which is really helping too, and I've put the fire on, made a hot decaf coffee (the other one went cold!) and grabbed a blanket to see if that stops the shivering.

She is an absolute joy, and a treasure, and she has taught me so much about the world, that we are actually incredibly lucky. She will not be rushed by anyone, and stops to look at every snowdrop, leaf bud and daffodil, so thanks to her I now see the seasons and the world unfolding day by day. Every morning she instantly goes from fast asleep to wide awake, and is always raring to get out of bed, so greets each day with promise and adventure, and has taught me to do the same. She has taught me to say (much!) less and watch much more, particularly when you want to scream and yell, which has made me a much better person. As she is getting older I can see how "behind" her peers she is, but she is caring, and loving, and fiercely loyal, so even though her little band of friends is small, they are kind, good children.

That was the most unsettling, upsetting overwhelm of emotion I have ever had, and you have all helped so much, thank you. I am feeling much more like my normal self now, and I definitely need to focus my efforts on making sure she has the fullest life she possibly can.

Just came on to say that although none of this is your fault, your feelings of guilt are completely valid and us telling you you're not to blame isn't going to help you feel any better. You need to process all of this and come to terms with it in your own time. Hopefully you can get some support, I've seen PPs have said there's some threads on the same subject in other places on MN? it's worth asking the hospital if there is any counselling available that would be specific to this kind of thing, or having a look privately maybe? For now, let all the tears out, talk about it to someone close to you, and it's ok to feel what you're feeling. You'll get through this. You are a good mum and you aren't to blame and I hope in time you can believe it too.
Sending massive hugs xxx

Your dd sounds absolutely amazing, the apple didn't fall far from the tree there op.

Glad you're feeling a bit better 💐

The first thing a mother has to do is keep her self healthy. Because if you fall ill the child would suffer too. You were doing your best at the time.

Not your fault at all. You did not know, and were probably told it was safe.

Consider going back in time, and knowing the things you knew at the time. Would you take it again? The answer is probably yes, because at the time you had no reason to suspect there’d be a problem. None of us have a crystal ball in life. Be kind to yourself

Your post really broke my heart, OP. This most certainly is not on you and you have made the best you can under the circumstances. Remember that your child needs you, that you are the best thing in her life and please hold on to that thought.

Think about the flip side for a second: I had severe hyperemesis and the drug the doctors prescribed was supposed to be super safe. I didn't take it for the longest time. I was too scared. Until I was told by my doctor eventually that I am putting my child at risk and, without the drug, I wouldn't make it and neither would the baby. I eventually took it very reluctantly. Would I have guilt for the rest of my life if something had gone wrong? Absolutely! Would I be to blame? In reality, no. And neither are you.

Please focus on the way forward and continue to have this very positive attitude of just dealing with what life throws at you. You will certainly get some lemons along the way, but I am sure also some wonderful moments to be cherished.

Woah, hang on a minute, you didn’t cause any of this. If a doctor tells you to take medication, of course you’re going to trust them. You weren’t injecting illegal drugs into your veins or glugging back bottles of gin, or doing anything else that is now known isn’t healthy for babies. You just did what every single one of us has done and trusted a medical professional. None of this is on you.

And she sounds bloody beautiful, inside and out. Perfect in a different way.

The doctors didn't know, so how could you have known?

https://www.oacscharity.org/ and infactuk.com/useful-resources/ might help.

The dogs keep licking my face and bringing me their teddies which is really helping too,

This is so beautiful. Your dogs know you are sad and they are loving you. It's amazing how in tune they are with your feelings. Sometimes you need to feel the feelings. Let the feelings flow for now.

Thank you. The irony was that my ex husband and I tried to conceive for years, I wasn't on SV then, and nothing happened. I was so desperate to have a baby, and in the end we lost the marriage because of it. When I did get pregnant her father and I had only been together a year, it was still quite a casual relationship, it was entirely unplanned, and I finally felt whole. All I ever wanted to be was her mum. Having her makes me feel like I am the person I was supposed to be. That sounds so twee out loud!!

Not your fault at all, please don’t beat yourself up. You sound like an amazing mother who cares so deeply - look how much you’ve done and are doing for your child. It isn’t your fault xxxx

I'm sorry to hear about this. It must be so difficult for you, you sound like a lovely mum and it is definitely not your fault. It's the fault of the pharmaceutical companies.

There are lots of law firms that can and have pursued legal claims for damages as a result of this medication being given to women without any warnings about taking it in pregnancy.
Damages can include monetary compensation to help with care and support needs for your child in the future.

Not something you might want to think about right now but just bear in mind any claim will have an expiry date, quite often with medical negligence it is 3 years from the date of knowledge of the negligence (so perhaps in your case the date of your meeting confirming the link to the medication). It's definitely worth exploring - the more financial resources you have the more support you can get for your daughter.

Your affirmations - for whenever you need them:

Being her mother, makes me feel whole.
I am the person I am supposed to be.
My daughter is a joy, and a treasure.
I am incredibly lucky.
I look at every snowdrop, leaf bud and daffodil.

I see the joy in the seasons and the world unfolding day by day.
I greet each day with promise and adventure
I say less and watch more

It is OK to feel sad, to feel broken, to want to scream and yell,
I allow these feelings to come.

I am amazing.
I am strong.
I am love.