A heartbroken mum-of-two has told the devastating story of how she lost her 15-month-old daughter to a rare brain condition with no warning signs.
Tara Lyons, 37, and her 34-year-old partner, Daniel O’Sullivan, put their baby girl Sofia to bed back in April 2020 and noticed that she had the sniffles, which they thought was just a result of her teething.
The next morning at breakfast, young Sofia was turning down her breakfast and after her mum took her in her arms, the tot’s head dropped forward without warning.
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Her mum recalled how she panicked as the baby couldn’t open her eyes and so they rushed Sofia from their home in Hertfordshire in the UK to a nearby hospital where just hours later she fell unconscious and passed away.
It was later determined that Sofia had suffered from a rare brain condition called Arteriovenous Malformation, despite never showing any symptoms.
AVM is an abnormal connection between the arteries to the veins which disrupts the normal circulation of blood.
Tara said she suffered with gestational diabetes throughout her pregnancy, but that from the moment Sofia was born, there were never any problems. “She was such a lovely and happy baby,” Tara said.
“Over the year and a half of her life, she met all her milestones and her weight was fine. She was crawling, walking, saying a few words, and had never been to hospital.”
Describing Sofia, her mum Tara said: “She was so beautiful and gentle and she always had her wispy hair pulled into a little Bam Bam ponytail.
“Even though some people don’t think they have personalities at that age, she really did. She was so funny and cheeky and sassy.”
She added: “She was the biggest Moana fan She would sit and watch the whole film and screw up her face at the bad character or smile with the good characters.
“If she ever spotted Leo with the Milky Ways, she would be right after him for them. Whenever I watch a video of Sofia, she is always laughing at something Leo is doing.”
Going back to the time of their tragic loss in 2020, Tara said: “The day before, on the 6th [of April], Sofia had been fine but she had a little bit of a stuffy nose, so we thought maybe she was teething.
“She slept really well and in the morning she seemed fine. But when Daniel came to take her for breakfast, she didn’t want her toast.”
She added: “When he handed her to me, her head just dropped forward and she had no strength and her eyes weren’t opening.” Tara and Daniel called an ambulance and Sofia was taken to hospital.
She said: “Sofia was sat on my lap. The doctor came in and said that they need to give her some antibiotics.
"But then I looked at her and it was like I saw her take her last breath. I started screaming.”
The youngster was rushed into intensive care, as doctors tried their best to stabilise Sofia’s condition, but she was remained unconscious. She was then transferred to Great Ormond Street Hospital in London, where she underwent a number of tests to understand what had happened.
Tara said: “They kept asking me if she had ever had any seizures or any speech issues or eye issues but she had nothing. They were so shocked.”
After a day in the hospital, Sofia went for a CT scan which revealed she had suffered a brain AVM.
“Everything was a blur. They kept saying to me that she was really not well but I just kept thinking she would be okay,” Tara said.
“We were a normal family of four stuck in lockdown and then two days later my daughter is lying on a bed in life support. You never want your child to have seizures or be in pain, but if she had, there would have at least been a sign.
“When they gave her the CT scan, they had to shave some of her hair off and I thought, that’s her first haircut.” After further tests and an attempt to relieve the pressure on Sofia’s brain, the doctors confirmed the worst – that there was no hope of survival.
She said: “There was too much damage on Sofia’s brain, she had a bleed on the brain and an aneurysm. I felt nauseous and sick.
"My head was swimming with information. There was so much to digest, let alone the fact you’ve just been told your daughter is not coming out of this alive.”
Tara added: “I didn’t want to leave the room because I knew once we did, we would have to face the truth.” On Easter Sunday, six days after Sofia was first taken to hospital, her life support was turned off.
Approaching what would have been Sofia’s third birthday last December, Tara felt an overwhelming urge to create something in her memory.
She decided to create a charity Christmas anthology, filled with young-adult short stories, penned by a host of renowned authors to raise awareness of the tragic condition.
Speaking about how the idea for the book came about, Tara said: “I remember going to pick up balloons my friend had made for Sofia which said Happy 3rd Birthday, to place at her graveside, and it took my breath away.
“I only had one birthday with her. I couldn’t understand how it was her third.
“I was heartbroken. I knew then that I wanted to do something good in her memory.”
Speaking about the project now it has been complete, Tara said: “Seeing the anthology now, that I have created and put together myself, is so special. The cover of the book has a little girl reaching for the stars and it looks like Sofia, in such a gentle and sweet way that was just like her.”
The book is due for an early release next month ahead of the Christmas season, and Tara hopes they can help spread awareness of brain AVMs and raise money for The Butterfly AVM Charity and Great Ormond Street Charity.
She said: “Creating this anthology pulled me out of a really dark spot. It means so much to know there will always be something out there in Sofia’s memory. And if it helps someone who has gone through what we have gone through, then that is amazing too.
"Brain AVMs are not widely known at all and if I can help raise awareness as well as money for two amazing charities, that would mean the world. I just want Sofia to be remembered as my Moana - a loving, beautiful girl.”
You can donate to Tara’s fundraiser in memory of Sofia here, and you can pre-order Written in the Stars here.
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