TTC despite potential genetic condition

[Robs20]

First time poster but I need some advice...

Here is the background:
Dd1 was born with serious health issues - she was in nicu for 4 months and had more ambulance trips/ hospital admissions than I can remember. She was under cardio, neuro, audiology, metabolics, max fax and had regular OT, physio and speech and language at home. It was a lot and almost broke me but we coped and had some happy times together.
She died very suddenly and very traumatically from a virus aged 13 months. Before she died we had been planning to have another child and the desire is still very strong - but I am so worried about going through this again. I can cope with the condition but the thought of bringing another child into the world who will suffer/ may not survive makes me very nervous.
Her condition was never diagnosed but there is a chance it was genetic and would happen again. Geneticist has said the risk could be 1/4 or 1 in millions so they will guesstimate at 1/10 risk of it happening again.
DH and I have been round in circles on what to do - would we be crazy to try and conceive naturally again? Is it my intense desire to be a mum again making me consider silly (risky) options? The alternative is ivf with a donor.
Has anyone been through this/ anyone that hasn’t...any advice?

Hi there- I'm afraid I have no advice but I read your thread and couldn't leave without saying I'm so sorry to hear about your daughter. That must have been so so hard on you both. I am sure that you will make the right decision In whatever you decide xxx

So sorry for your loss.

Can they do any general genetic tests whilst early pregnancy? If not can you go private for this (this may be out of budget)?

I have a genetic condition and get one go at PGS IVF. Could you enquire about this?

I am so sorry for your loss. I cannot even begin to imagine what you have been through.
Can you and your partner have genetic testing done? I had to have genetic testing done as my husband is a carrier for a genetic condition and they did it through blood tests. Its worth speaking to your Dr about.

I’m so sorry for what you are going through.

I’m guessing, maybe wrongly, that as your daughter did not have a diagnosis, they can not accurately genetically test you and your partner? Correct?

I think you have to turn the stats around. So you have a 3 in 4 chance of a healthy child, or a 999,999 in 1,000,000 of a healthy child or a 9 in 10 chance of a healthy child.

I think when you look at them this way, they are way more positive. Ultimately only you and your dp can decide, and know how you will cope if your next child also has the same condition.

However, I have worked with many children who have genetic conditions, and I honestly have not met any, who’s siblings have come along later and had the same condition, even for those with 50:50 chance, or higher.

Now that’s obviously not to say yours will not. But a 9:10 chance of a healthy child, is pretty good going I would say. The reality is no parent is guaranteed a healthy child unfortunately, and you’ve experienced the harsh side of that. But honestly if I was in your position, and my relationship was strong enough that if the worst happened, we were there for each other, I would 100% try for another child. We’ve recently had a baby girl born into our family, and unfortunately her sibling passed away last year. But the joy she has brought ☺️, obviously she’ll never replace her sibling, but there are smiles that we never thought we’d see again on her mum and dad. She has brought so much joy. X

Sounds like a complex condition. I think I’d be tempted to try. The option of IVF with a donor will still be there later.