March 17, 2023

Hᴜɴᴛɪɴɢᴛᴏɴ’s ᴅɪsᴇᴀsᴇ Won’t Stop Me Having A Baby

Hᴜɴᴛɪɴɢᴛᴏɴ’s ᴅɪsᴇᴀsᴇ Won’t Stop Me Having A Baby

Heather has Hᴜɴᴛɪɴɢᴛᴏɴ’s ᴅɪsᴇᴀsᴇ and knows that the baby she will give birth to in the coming days may have ɪɴʜᴇʀɪᴛᴇᴅ ɪᴛ too. As Heather’s ʜᴇᴀʟᴛʜ ᴅᴇᴄʟɪɴᴇs, her husband, Adriaan, will care for her. One day, perhaps 30 or 40 years from now, he may end up caring for their son or daughter too. But both were keen to have a child even so.

“I am so proud of my mum, she was ᴀɴ HD ᴡᴀʀʀɪᴏʀ. She was a caring, warm and loving person and I hope my baby will take after her,” says Heather.

Carol who was Heather’s mother ᴅɪᴇᴅ ᴡɪᴛʜᴏᴜᴛ knowing that her daughter had inherited HD too. Heather and Adriaan’s baby will face the same odds – as with all children who are conceived naturally to a parent with the Fᴀᴜʟᴛʏ HD ɢᴇɴᴇ.

Heather and Adriaan had been trying for a baby before they knew Heather had HD.

In 2016 she was working as an ᴜʟᴛʀᴀsᴏᴜɴᴅ ᴛᴇᴄʜɴɪᴄɪᴀɴ when she developed sʏᴍᴘᴛᴏᴍs. She knew what was happening, the official ᴅɪᴀɢɴᴏsɪs that followed felt like a Fᴏʀᴍᴀʟɪᴛʏ So the couple faced a decision whether to continue to try for a baby or not.

“My first thought was I couldn’t put my husband through caring for both me and ᴘᴏᴛᴇɴᴛɪᴀʟʟʏ ᴏᴜʀ ᴄʜɪʟᴅ, ᴀɴᴅ ᴛʜᴇ ʜᴏʀʀᴏʀ ᴏF ᴍʏ ᴅʏɪɴɢ ᴀs ᴡᴇʟʟ ᴀs ᴛʜᴇ ᴄʜɪʟᴅ. I had watched my mum ᴅɪᴇ and that was hard enough, so I didn’t want to potentially put my husband through that twice.”

Her ᴅɪᴀɢɴᴏsɪs cast Heather into a sᴛᴀᴛᴇ ᴏF ᴅᴇᴘʀᴇssɪᴏɴ and initially she and Adriaan put a decision on hold. But eventually they decided to make enquiries with the NHS about a fᴇʀᴛɪʟɪᴛʏ ᴛʀᴇᴀᴛᴍᴇɴᴛ ᴄᴀʟʟᴇᴅ ᴘʀᴇɪᴍᴘʟᴀɴᴛᴀᴛɪᴏn ɢᴇɴᴇtic ᴅɪᴀɢɴᴏsɪs (PGD) I.V.F.

The ᴇᴍʙʀʏᴏs ᴀʀᴇ ᴛᴇsᴛᴇᴅ Fᴏʀ ᴛʜᴇ Fᴀᴜʟᴛʏ ɢᴇɴᴇ ahead of being implanted, so any pregnancy will result in a child that is HD-free. However, by this stage Heather was 38, two years from the ᴄᴜᴛ-ᴏFF ᴘᴏɪɴᴛ Fᴏʀ Fʀᴇᴇ NHS ᴛʀᴇᴀᴛᴍᴇɴᴛ in her area, and she was told that being sʟɪɢʜᴛʟʏ ᴏᴠᴇʀᴡᴇɪɢʜᴛ would affect the chances of success. The couple then went to a private clinic in Belgium but were eventually told that because Heather ᴀʟʀᴇᴀᴅʏ ʜᴀᴅ sʏᴍᴘᴛᴏᴍs ᴏF ᴛʜᴇ ᴅɪsᴇᴀsᴇ, they couldn’t proceed any further.“We didn’t want our child to think that wanting them was on the condition they didn’t have the HD ɢᴇɴᴇ,” Heather says.

They knew that if they did bring into the world a child with the Fᴀᴜʟᴛʏ ɢᴇɴᴇ its adulthood could be ᴄᴜᴛ sʜᴏʀᴛ, and this gave them pause for thought. But there had just been major progress in the search for a ᴛʀᴇᴀᴛᴍᴇɴᴛ and in this knowledge they resumed trying for a baby.

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