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Daily Record
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Katie Williams & Steven Rae

Scots mum's 'agony' as premature baby daughter dies at 31 days old from bowel condition

A Scots mum has spoken of her heartache at losing her newborn baby daughter, as her son prepares to run a mini-marathon as a tribute.

Heather Ellis, 32, and partner David Stenhouse from Musselburgh, East Lothian tragically lost their daughter Lindsay at just 31 days old after she was diagnosed with Necrotising enterocolitis (NEC). Lindsay was born 12 weeks premature on August 11, 2022 and died on September 4 at the Royal Infirmary of Edinburgh.

Describing grief as "like a wave", Heather is now trying to raise awareness of the condition to help others in her situation, reports Edinburgh Live.

Heather's son Eli, 11, is now running to raise donations for the Edinburgh charity Held in Our Hearts, which supported the family in their time of need.

Heather said: "It's still very raw. With her tiny bowels, once it set in, there was no going back. The hospital wanted to perform an ileostomy to see if they could fit a stoma bag and see if they could retain some of her intestines.

"But when they took her for the operation, there was nothing left, none of her small bowel left, it was all gone. And the small bowel is the one that absorbs and digests all the nutrients in your body."

NEC can be difficult to diagnose, according to the NHS. The serious illness causes tissues in the intestine to become inflamed and start to die. It can then result in a hole developing where contents of the bowels can leak into the abdomen, resulting in a very dangerous infection.

Eli is running to raise funds for the Edinburgh charity. (Heather Ellis)

Heather said: "Looking back, it was agony. The 31 days of photos we've got of her, she's doing fantastic for the first 20 days - she was doing great. But when the nurse thought it was NEC, suddenly she just went downhill so fast.

"You just get stuck in your bubble, you don't know what's happening and we didn't really understand or have any definitive answer as to why it happens or how. There's no answers.

"The trauma of losing a baby is horrendous. I wouldn't wish it on anyone."

Lesley and David were visited by a psychologist from the neonatal department of the Royal Infirmary, who she still sees. Once Lindsay died, Held in Our Hearts were also there to support the couple.

Heather said: "Tracy, from Held in Our Hearts, was there from day one. She is always on the end of the phone if I need her, even on her days off. It started off with texts, then phone calls, and now we meet up.

"It's completely at the parent's pace, they know everyone's different. It's just so good to know she is there.

"No one should have to bury their child, this isn't a nice place to be. This isn't a club you want to be in, it's the worst club in the world."

Heather went on to say that no matter what time of the day it is, she knows she can always get in touch with Tracy, who has been a huge support to the family. Heather admits that some days she "feels like drowning", however Tracy has told the heartbroken mum: "You will swim again."

Lindsay had a post-mortem and her family supplied the tot's blood sample to help with further research for NEC.

Heather said: "They were able to take her blood samples for research. I felt like we were doing some good with her. There was no way she was able to survive so if they could find something in that research to stop another family going through what we went through, it would mean the world."

Eli is running the Edinburgh Marathon Kids Festival, on Saturday May 27 and Sunday May 28 2023. For more details and to donate, visit Eli's GoFundMe page.

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