Though baby Margot only lived 50 days outside the womb, her parents want the world to know that her life was valuable.
In an interview with the Metro, parents Jodie and Jamie shared about their struggles with grief and the many other emotions that come with caring for a terminally ill child.
“We thought we could deal with whatever’s thrown at us,” Jodie said. “But then, when we heard a doctor say the words ‘life-limiting,’ we had the rug pulled out from under us.”
Margot was the couple’s first child.
Born July 16, 2020, Margot immediately was placed in an incubator, according to the report. Initially, the doctors did not know what was wrong with her.
“You think of all the worst case scenarios and we knew something was quite wrong,” Jodie said.
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Ten days later, doctors diagnosed Margot with Edwards Syndrome, a rare, often fatal disorder, and no one was sure how long she would live, the report continues. Jodie said it is “baffling” that none of the doctors saw signs of the disorder before Margot was born.
“It was completely shocking and devastating,” Jodie said. “We knew there was something, but what we hadn’t prepared for was the condition she had to be life-limiting. … You latch onto hope – you do think my child might be one of the exceptions to the statistics.”
Jodie and Jamie spent as much time in the hospital as they could with their daughter, but the whole experience felt unreal.
“We felt very connected to our daughter and love her, but there was a disconnect because you’re having to leave your child on their own and it didn’t feel like she was ours when we had to ask for permission to hold her,” Jodie continued.
A few weeks before Margot died, the doctors arranged so that she could go home on hospice, her mother said.
Here’s more from the report:
It was at this stage that the new parents formed some of their most precious memories with their baby, as they decided to take Margot out for a ‘normal’ day.
‘We took her shopping and sat and had a lunch, my husband and I,’ Jodie says. ‘It wasn’t without its drama, seeing people give you looks because you’ve got a big oxygen tank strapped to the bottom of your pushchair.’
They also organized a picnic with family and friends to meet Margot and celebrate her life.
“We had balloons and cake and party bags for other children,” Jodie said. “It was just a really happy day and an opportunity to celebrate her, but not in the way you would at a funeral.”
Margot died on Sept. 4, 2020, just 50 days after she was born.
Her parents recently decided to share her story as part of Baby Loss Awareness Week with the hope of encouraging other families going through similar losses.
“You can’t be the same person as you were before, it’s just different,” Jodie said.
Every life makes an impact, no matter how short, and Jodie said they will remember and grieve for their daughter for the rest of their lives.
