Mum thought toddler just had the 'sniffles' before she died of rare brain condition – what is an AVM?
A mum whose 'happy and healthy' toddler had 'the sniffles' one night suddenly fell unconscious the next morning before dying of a rare brain condition, something she's now committed to raising awareness of.
Loving parents Tara Lyons, 37, and Daniel O'Sullivan, 34, put 15-month-old Sofia Lyons-O’Sullivan to bed with the sniffles one evening in April 2020, thinking she was just teething.
But by breakfast time, when they tried to convince their daughter to eat some toast, her head dropped forward without warning and they soon realised she could no longer open her eyes.
Tara, a production editor for a publisher, and Daniel, a warehouse manager, immediately rushed Sofia from their home in Borehamwood in Hertfordshire to hospital.
Devastatingly, she fell unconscious just hours later and didn't wake up again, due to a condition called Arteriovenous Malformation (AVM).
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But, despite the traumatic events for the family, which also includes Sofia's older brother, Leo, nine, Tara has managed to create some much-needed light from a "dark" situation.
Nearing what would have been Sofia's third birthday last December, she felt the urge to make something in her memory and set her heart on a Christmas charity anthology, with young adult mixed fiction short stories written by a selection of renowned authors to help raise awareness of what an AVM is.
And the book, Written in the Stars, is now due to be published by Bloodhound Books (her place of work), next month.
Sofia's story
"Sofia went to bed a happy and healthy baby on the Monday night and by the Tuesday afternoon, she was unconscious," says Tara, recalling the painful events.
“I never got to see her beautiful blue eyes again.
“I walked in to the hospital with my one-and-a-half-year-old, and left with a box of memories.”
On her overwhelming decision to honour her daughter in some way, she says, "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.”
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And the tribute book to her daughter has already proven worthwhile.
"Seeing the anthology now that I have created and put together myself, is so special," she explains.
"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."
While Tara suffered with gestational diabetes, high blood sugar (glucose) that develops during pregnancy and usually disappears after giving birth, there were never any problems after Sofia was born.
“She was such a lovely and happy baby,” proud mum Tara says.
“Over the year and a half of her life, she met all her milestones and her weight was fine.
“She was crawling, walking and saying a few words and had never been to hospital.”
Sofia was also developing a special relationship with her older brother Leo, with the pair getting up to mischief together, or her laughing at something funny he was doing. “She was so beautiful and gentle and she always had her wispy hair pulled into a little ‘Bam Bam’ ponytail," Tara says.
“Even though some people don’t think they have personalities at that age, she really did – she was so funny and cheeky and sassy.”
But, while the family made the most of it at first, it wasn't long after the onset of the COVID-19 pandemic in March 2020 that the joys of family life soon took a turn for the worst.
“We were actually loving the first few weeks of lockdown because we had just moved from a two-bed flat to our new three-bed house with a garden and we had all this space and time together as a family," Tara recalls.
“Sophia had her own room, with grey mountains painted on the walls and lots of pink and leopard print blankets and cushions, and lots of books – just as it still looks now.”
But on April 7, things changed. “The day before, on the 6th, Sofia had been fine but she had a little bit of a stuffy nose, so we thought maybe she was teething," Tara explains.
“She slept really well and in the morning she seemed fine but when Daniel came to take her for her breakfast, she didn’t want her toast.”
She adds, “When he handed her to me, her head just dropped forward and she had no strength and her eyes weren’t opening.” This was the point that Tara and Daniel called for the ambulance.
At the hospital, Sofia was sat on Tara's lap and the doctor came in and said they needed 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," says Tara.
Rushed to intensive care, the doctors worked hard to stabilise Sofia's condition, but she remained unconscious. Transferred to Great Ormond Street Hospital in London, she had a number of tests to try and determine what had happened.
“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," Tara explains.
After a day in hospital, Sofia had a CT scan which revealed she had suffered a brain AVM on the stem of her brain.
“Everything was a blur, they kept saying to me that she was really not well but I just kept thinking she would be okay,” she says.
“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.”
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Despite never showing any symptoms, Sofia still had an AVM.
Tara adds, “You never want your child to have seizures or be in pain, but if she had, there would have at least been a sign."
After further tests and an attempt to relieve the pressure on Sofia’s brain, the doctors had to break the heartbreaking news that there was no hope of survival.
“There was too much damage on Sofia’s brain, she had a bleed on the brain and an aneurysm, a bulge in a blood vessel caused by a weakness in the wall," explains Tara.
“I felt nauseous and sick. My head was swimming with information.
“There was so much information to digest, let alone the fact you’ve just been told your daughter is not coming out of this alive.”
“I didn’t want to leave the room because I knew once we did, we would have to face the truth,” Tara adds.
It was on Easter Sunday, six days after she was brought into the hospital, that Sofia's life support was very sadly turned off.
“They brought us in the room with a couch and they gave us a box of things, so we would make clay footprints and handprints and take pictures,” says Tara, remembering the surreal events.
“Then we sat down and that was the signal for us to hug Sofia and when we were ready, it would be time.
“All I could hear as I held Sofia was Frozen’s Let it Go in the background and I’m not sure what it was, but I looked at Dan and we knew it was time. It broke my heart.”
Coming home that day without Sofia, Tara and Daniel had to explain to Leo, then seven, that she wouldn't be joining them. They all stood in the kitchen, hugging and crying.
In some ways, the lockdown helped to give the family the time they needed to grieve privately.
On what would have been Sofia’s third birthday, Tara says, “Sofia’s birthday is December 13, the day after Leo’s on the 12th, so it is always really hard to celebrate one day, knowing the next, she is not there to celebrate with."
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But, with the Christmas charity anthology idea a shining light, she couldn't believe the response.
“We had nearly 100 submissions, I was overwhelmed,” says Tara.
“When I told Daniel how many people had sent things in, he was really moved.”
The authors of the 23 stories include crime fiction writers Angela Marsons and Joy Ellis and novelist Louise Beech, with a foreword from Tara herself, introducing the book in Sofia’s memory.
Now due for early release next month, ahead of Christmas, Tara hopes they can help spread awareness of brain AVMs and raise money for The Butterfly AVM Charity and Great Ormond Street Charity.
“Creating this anthology pulled me out of a really dark spot, and it means so much to know there will always be something out there in Sofia’s memory," she says.
“And if it helps someone who has gone through what we have gone through, then that is amazing too.”
What is an Arteriovenous Malformation?
An AVM is when an abnormal connection between the arteries to the veins disrupts the normal circulation of blood.
AVMs are so rare they occur in less than 1% of the population, according to NHS Foundation Trust The Walton Centre.
Normally, arteries take oxygen-rich blood away from the heart to various parts of the body under high pressure that have strong muscular walls. These arteries flow into small capillaries, which are the tiny vessels that deliver oxygen-rich blood to tissues and carry away waste products.
The high flow blood from arteries is slowed down through this 'capillary network'. Capillaries then flow into veins to transport the blood back to the heart, and the veins have thinner walls because they take the blood back to the heart under low pressure.
However, in an AVM, this process is disrupted by the 'tangle' of abnormal and poorly formed blood vessels.
AVM cause, who they affect and symptoms
The cause of AVMs aren't always exactly known, but it is thought they are almost always present at birth, though they might not be very obvious, according to Great Ormond Street Hospital. This could come from an error in blood vessel formation in early pregnancy.
In a small number of cases, they arise from an inherited condition, but there is nothing to suggest they are the result of something you did or did not do in pregnancy.
AVMs can affect men and women equally, occur in all races and are mostly discovered between the ages of 20-40, with sizes varying from person to person, according to the NHS Foundation Trust.
They can happen anywhere in the body, and while there are different types, those in the brain cause the most concern because of the problems that can occur if they bleed.
While some cases of AVMs don't cause symptoms and are found incidentally, there are things to be aware of to help you spot it earlier if possible.
These include, as per the Trust, seizures, haemorrhage, headaches and stroke. The hospital also states it might cause blue, purple or red discolouration, swelling and sometimes visible blood vessels, with the area feeling warm, and things like ulcers developing due to weak skin. Seek immediate medical help if you are concerned about any symptoms of an AVM.
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