A mum from East Lothian has spoken out about losing her baby as her son prepares to run a mini-marathon as a tribute.
Heather Ellis, 32, and partner David Stenhouse from Musselburgh 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 she died on September 10 at the Royal Infirmary of Edinburgh.
"Grief is like a wave", the mum said. She doesn't want anyone to go through what she did and is now trying to raise awareness. Heather has had a lot of support from Edinburgh charity Held in Our Hearts, which her five-year-old son Eli is now running to raise donations for.
READ NEXT - Edinburgh police recover body from waterfront in search for missing man
Speaking to Edinburgh Live, 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 a laparotomy 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, it is serious illness which 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.
Heather said: "Looking back, it was agony. The 31 days of photos we've got of her, she doing fantastic for the first 20 days, she was doing great! But when the nurse thought it was NEC, suddenly she just went down hill so fast.
"You just get stuck in your bubble, you don't know what's happening and we didn't really understand or had 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."
During this heart wrenching time, Heather and David was visited by the psychologist from the neonatal department, who she still sees now and once Lindsay had passed, Held in Our Hearts were also there supporting Heather and her partner, David.
"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."
But while there is a supportive community, the reality is heartbreaking and tragic. "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 and has been a huge help and support to the family. When Heather admits that some days she 'feels like drowning', Tracey replies, 'You will swim again'.
Lindsay was put through a post-mortem and her family offered her blood sample to help with further research for NEC.
"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."
Now Eli is running the Edinburgh Marathon Kids Festival which takes place on Saturday May 27 and Sunday May 28 2023.
"He's out running with his dad just now, he's ecstatic because he'll get a medal at the end!" Heather laughed, "He's been training, going on runs and eating healthy for it."
You can support Eli and his run for Held in Our Hearts at gofundme.
READ NEXT-
I went for my first-ever smear test in Edinburgh and have some thoughts
Staff at West Lothian petrol station terrified after man with fake gun demands money
Edinburgh man dies after being hit by a bus in city centre tragedy
Edinburgh woman living in middle of graveyard locked in bitter row with council
Edinburgh couple left speechless as TUI cancel dream cruise just three stops in
