LGBT Baby Loss | Things I Googled

So touched by this story of Codename, a little girl who was and still is so loved by her mums. This is the first post, from one of Codename’s mum. You can read the other later in the blog series.

20 week scan day. So this is roughly how it went…

Friend: 20 week scan, how exciting. Are you going to find out what you’re having?

Me: No. I’m hoping it’s a kitten… (I can’t tell them that we really want a girl, because boys don’t make as much sense, and have penises and smell)

Everyone: Ha ha ha

At the scan…

Radiographer: There’s the heartbeat, there’s the legs. Do you want to find out the sex?

Me: No. We want a surprise… really I want a kitten.

Everyone: Ha ha ha. Look away from the screen now then…

Radiographer: Come on baby. Move around, I need to see your heart. It’s a very active baby… hold on I’m just going to ask a colleague.

Radiographer: I think we need to refer you to the consultant, probably nothing to worry about but just to be on the safe side…

Seven days, four scans, endless tears and thousands of steps later…. The baby has a heart condition and brain condition. They may or may not be related. The heart thing (hypo-plastic left heart) means surgery within a week of birth, and again at three months, and as a toddler all with a minimal chance of survival beyond adolescence and severely impacted quality of life. The brain thing (Dandy Walker Syndrome) might mean problems with everything from motor co-ordination and cognitive function, eating, drinking, talking and walking. Our little Codename Copenhagen was not meant for this life. The following day we were booked in for a procedure to stop (her) heartbeat.

The things I Googled:

• What is HLHS… What I was thinking: “What is this crazy thing I’ve never heard of? What causes it? what did I do wrong?”
• Dandy Walker Syndrome…What I was thinking: “What is this crazy thing I’ve never heard of? What causes it? What did I do wrong?”
• Termination after IVF treatment… What I was thinking: “Who the fuck goes through fucking IVF to have a fucking abortion? Who saves for years, spends over £15,000 trying to get pregnant to then have a termination?”
• Termination at 22 weeks – What happens next. What I was thinking: “Surely they don’t expect me to go through LABOUR?”

 

I don’t really know what being two girls had on our experience, or if I would want anyone to do anything differently as a result. We were both treated with the utmost respect, care and dignity. I really didn’t feel that our sexual orientation made any difference, except maybe a slightly more sympathetic acknowledgement that is was an ‘IVF pregnancy’ – although how much more sympathy do you need?

I do know that I felt utterly bewildered about how we could possibly be in this situation and I desperately wanted to know that there were people LIKE US who had been through something similar.   In my despairing search I read more and more heart breaking stories of people who’d had a termination for medical reasons – TFMR (it even has an acronym, and websites dedicated to parents in our situation, who knew?). But still I couldn’t find anyone LIKE US. So here it is. Here we are: Two girls who wanted a baby who did all we could, but it wasn’t quite enough for our perfectly imperfect little girl. We comfort ourselves in the knowledge that our pain is our way of preventing her from experiencing pain, and this was the only decision we could make. And we got a kitten.

I’m so sorry that you’re reading this. If you are, and it means that you’ve also been in this heart-breaking, life-defining situation my broken heart reaches out to you, sending love and hope for the future.

From Codename’s Mum

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As part of this blog post, Codename’s Mum would like to share some of the resources that she discovered, incase it is helpful to others:

Antenatal Results and Choices : www.arc-uk.org

Bellacouche – A Child Cacoon Shroud – a gentle and soft alternative : https://bellacouche.com/soft-eco-coffin/baby-child-coffin

A Heartbreaking Choice – Support for those who have terminated a much wanted pregnancy : http://www.aheartbreakingchoice.com/

Information on Ending a Pregnancy due to a Fetal Abnormality : http://www.healthtalk.org/peoples-experiences/pregnancy-children/ending-pregnancy-fetal-abnormality/coping-bereavement-womens-experiences

 

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This post is shared as part of the #LGBTBabyLoss Blog Series. To read more, or to submit your own experiences, visit the LGBT Baby Loss Blog Series homepage here.