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Antenatal tests

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Who can I talk to prior to conceiving?

4 replies

Alexandra84 · 01/08/2023 23:34

I’m hoping someone might be able to advise or share their experience.
Im keen to try for our third child. We have two children, the youngest of who unfortunately has an inherited, life shortening condition. I’ve been referred to the genetics Dept because of the chance of this condition being passed to future children, and know we can have the Nipt to rule out this condition if we wish.
However, the worry that comes with being pregnant, based on the experience of my little boy, is filling me with extreme worry. The weeks following his birth were horrendous, we still struggle to reflect on it now.
I was also recently pregnant, but the sheer panic that came with the unknown, combined with a hospital admission for two weeks with my little boy, led me to terminate the pregnancy. I felt like I was in a blind panic, and absolute fear and overwhelming emotions were controlling me. I’m now devastated at the realisation of not having that child.
Before we go any further, who can I speak to to ask about testing/ screening etc? The genetics Dept could only explain what they specialised in. I asked if while we were having that blood work done, could we also source anything privately, but she said she didn’t know.
Who do I speak to? I’m sort of anticipating that GPs won’t be specialised enough, I don’t expect consultants to have the time to talk to us before even being pregnant, my midwife wanted to wait until 10 weeks before an appt.
I feel if I had some more answers, or knew more about our options, we would be able to make a better informed decision.
I feel so utterly devastated at all hat we’ve been through, and just desperately want to create the family I always imagined.
Thanks.

OP posts:
Whataretheodds · 01/08/2023 23:39

I have no experience of your particular situation but when i searched for NIPT a number of clinics certainly do types of genetic screening - it may be a case of researching a few of those (+ IVF clinics?) To see who can screen for this condition?

TwitTwont · 01/08/2023 23:39

Is there a charity for the condition? Very often they, or other parents on their forum, have a lot of information.
it must have been so difficult for you following his birth and then his admission and your termination, a charity may have a signpost to some support/counselling available if needed Flowers

MantaKay · 01/08/2023 23:58

The first step is usually a genetic counsellor. Have you seen one? What is the condition. Was it a somatic mutation or inherited from you? Have been tested for it?

BritInAus · 02/08/2023 01:59

Not sure where you are / what the procedure is, but where I am I would speak to my GP in the first instance and ask to be referred to the relevant person - that might be a private IVF clinic that can help with genetic testing, or department of a hospital. But your GP is generally the first place to go and can advise which specialist to see and refer you appropriately I would think.

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