‘Our Baby Only Lived For 50 Days – Nothing Can Prepare You For That’

Jodie and her partner Jamie, 35, were informed their baby, Margot, would not live through her first birthday just ten days after she was born. Margot was born with Trisomy 18, commonly known as Edwards Sʏɴᴅʀᴏᴍᴇ, a ʀᴀʀᴇ ɴᴏɴ-ɢᴇɴᴇᴛɪᴄ ᴅɪsᴏʀᴅᴇʀ that results in the majority of ᴘᴀᴛɪᴇɴᴛs being sᴛɪʟʟʙᴏʀɴ. ‘We knew something wasn’t quite right,’ Jodie said to Metro.co.uk. ‘We now know Margot had extremely typical physical characteristics of a kid with Edward’s sʏɴᴅʀᴏᴍᴇ: clenched fists, hammer toe, clubbed feet, low set ears, a tiny jaw, all textbook traits, so it’s surprising no one saw any of them.’

Jodie was scheduled for an induction on July 16, 2020, unknowing that her kid was severely ɪʟʟ. Jodie and Jamie were busy getting enthusiastic about the arrival of their first child when Margot was placed in an incubator right after she was born. The physicians, on the other hand, returned looking ‘ashen.’ ‘I believed she’d ᴅᴇᴀᴅ,’ Jodie recalls. Then a doctor expressed some reservations but didn’t specify what they were. When you consider all the worst-case possibilities, you realize something isn’t right.’ Doctors found Margot had been born with a sᴇʀɪᴏᴜs ᴀɪʟᴍᴇɴᴛ a few days later and informed the new parents.

‘It was absolutely unexpected and ᴛᴇʀʀɪʙʟᴇ,’ Jodie says. ‘We knew there was something wrong, but we weren’t expecting her condition to be life-ᴛʜʀᴇᴀᴛening.’ It was a lot to take in, and then I was left with this A4 sheet of paper printed off the internet, wondering… So, what’s next? You cling to hope, and you believe my child is one of the statistics’ outliers.’ Margot stayed in the hospital for the following four weeks, with Jodie and Jamie coming and going from the ward. It’s a setting that Jodie recalls as a location “where time stands still.”

‘We loved and felt extremely close to our daughter, but there was a gap because you had to leave your kid alone, and it didn’t seem like she was ours when we had to ask for permission to hold her,’ she adds. Jodie felt ʀᴏʙʙᴇᴅ of those “first newborn moments” while in the incubator. Margot was given special treatment while under constant surveillance, as she was in ᴅᴀɴɢᴇʀ of ᴅʏɪɴɢ at any time. After week four, it was decided that Margot may leave the hospital for the remainder of her stay. Margot was slowly weaned off of the equipment she’d be without while at the family home, and the couple had to learn how to feed her alone. They were also assigned hospice help.

The new parents created some of their most cherished moments with their newborn at this point, when they decided to take Margot out for a ‘regular’ day. Knowing that their kid will soon leave them, the parents were able to appreciate the simple pleasures of placing her in a car seat and driving, pushing her in a pram, changing her in a public restroom, and introducing her to their pet dog for a brief period. It was vital to have the picnic because “the notion of her only celebration being a fᴜɴᴇʀᴀʟ was just very ᴘᴀɪɴful.” The parents decided to make the day a mash-up of all of her birthdays and Christmases. Margot ᴅɪᴇᴅ at home on September 4th, at the age of 50 days.

The couple was given a chilly cot, also known as a cuddle cot, which allows parents to spend more time with their kids by preventing the baby’s body from going through natural changes so quickly after ᴅᴇᴀᴛʜ. It’s been an emotional rollercoaster since then. Jodie started an Instagram account to talk about how she was feeling as a method to process her sᴏʀʀᴏᴡ.

Jodie chose to participate in the You Are Not Alone project, an online exhibition developed by the organization Same But Different in honor of Baby Loss Awareness Week. Jodie’s involvement is hoped to show others that they are not alone in this ᴘᴀɪɴful experience. She believes that as more people become aware of baby loss, they would feel better equipped to offer support in whatever manner to those who are experiencing it.

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