I was sent an email (along with a handful of other DS mummies) this week… A woman in our area is 16 weeks pregnant and has had a blood test that has revealed a 99% chance of Down’s Syndrome… She has reached out for advice and I was more than happy to speak to her. We squeezed in a ten minute or so telephone chat whilst I wandered on my lunch break and she found a quiet spot in her office. And of course I came away thinking of all the things I should have said…
Unfortunately I couldn’t offer her the perspective of someone who had a prenatal diagnosis of Down’s Syndrome. I simply do not know what it’s like to be told that the life in your tummy is 99% likely to have DS and for that mysterious “bad news” to be hanging over you throughout pregnancy.
Ted and I have always said we were glad we didn’t know. I imagine the pregnancy would have been ruined by the dark cloud hanging over us. But then, is there something to be said about preparation? Would I have felt more joy/relief/love when Audrey was first born, had the DS been expected rather than a shock?
I spoke to the lady in question, starting by letting her ask questions, she kicked off with; “Well my mother said I wouldn’t be able to work if I have this baby, I’ll be at home caring for him/her, but obviously you’re at work? – Does nursery cost more?”
Yes I’m back at work three days, Audrey is at nursery twice and spends one day with Grandma (or Bibi as we have chosen). I said that possibly nurseries find a child with special needs a positive thing – they get funding and guidance on sensory toys etc. but at the moment, her needs aren’t very different, so it’s not a big deal for her to be at nursery.
We talked about health issues (Audrey being on oxygen for 6 months), the fact that once we got over the shock, we just had a baby to deal with… And she told me they have the heart scan for the baby this week so I said that could be helpful in putting their mind at rest. If baby escapes a heart issue, that’s a good sign… She did say they went for the amniocentesis but she couldn’t go through with it – she got upset seeing the baby on the screen. So I guess she’s not keen on termination. However the discussion revealed her partner was perhaps leaning that way.
She was going to meeting with another DS mama that evening and I think there were at least 4 of us on the email. But I still felt I had to get her more help, so I emailed some contacts and sent on the email address of someone who did know they were carrying a baby with DS. I’ve passed on the contact and stepped back.
I desperately want to email her a ton of blogs and websites, as well as say; “No matter what, I guarantee you will love your baby” and basically flood her with positivity in the hope she will keep this baby, but of course that’s not the right way to go about this. She needs space and not some crazy person begging her to keep a child with special needs!
I guess I’ll know which way things go when she either turns up at a DS group… Or we never hear from her again.