Fife mum Amy Solon will never forget the day which would change her life forever in February 2016.
It was on this day the midwife at Queen Margaret Hospital wanted her to stay for a further scan because she felt something wasn’t right.
“It was a couple of days before Sosi was born that we discovered something was wrong,” Amy, 42, explained.
“The midwife, Bernadette, has said to me since she doesn’t know if it was intuition or gut instinct, she just had a feeling something wasn’t right.
“It was like it was all happening in slow motion.”
Amy, who is a qualified hypnotherapist from Dalgety Bay, continued: “Bernadette sent me for a scan and wanted to get input from a consultant.”
The scan showed Sosi had a rare condition called cystic hygroma, sometimes known as lymphatic malformation.
It results in the baby being born with a rare birth defect which can see the face and neck covered in large fluid-filled cysts.
This was just the beginning of Sosi’s health issues as she went on to battle sepsis, meningitis and invasive strep A.
Her mum Amy tells the story of a remarkably strong little girl who has fought her way back to health.
What is cystic hygroma?
Cystic hygromas are commonly found in the head and neck areas as well as the armpits.
A cystic hygroma forms when the lymph vessels fail to form correctly during the first few weeks of pregnancy.
They occur in approximately one per cent of children.
‘Blinded by love’ when Fife girl Sosi was born with rare condition cystic hygroma
It was a difficult time when Sosi was born on February 12, 2016.
“Sosi’s condition essentially meant her lymphatic system hadn’t connected properly, so she was born with a very large cystic mass on the right side of her face,” Amy said.
“The cyst pushed into the side of her face – it came from just around her eye, around her cheek, her neck and underneath her chin.”
Getting emotional as she recalled the moment her first baby was born – all she felt was pure love for her little girl.
“I was just so blinded by love.”
Sosi unable to have surgery on cystic hygroma
There was more heartache for Amy and Nick – who also have a second little girl Alannah, 5 – when doctors told them that Sosi would not be able to have surgery to remove the cystic hygroma.
This was because the operation could have damaged her eye and her vocal chords. It could also have potentially affected her ability to eat and drink.
Sepsis proved to be a blessing in disguise
But when Sosi developed a serious blood infection at the age of 18 months, it proved to be a blessing in disguise.
One night in November 2017, Sosi was very lethargic with a high temperature.
Amy and Nick took their daughter to the Sick Kids Hospital in Edinburgh.
Sosi was put on an invasive course of IV antibiotics and then put on oral antibiotics for a few weeks.
“We found out later it was sepsis but we had managed to catch it in time.
“But when she got sick her cyst got really big.
“It was very red and inflamed. This was because the infection was rife in her body.
“Yet something amazing happened.
“Over the next few weeks the cystic walls fused together and then collapsed.
“It was really remarkable. What had been quite shocking in terms of size, reduced to nothing. This was the silver lining of the infection.
“Nature proved to be the best surgeon.”
Sosi’s battle with meningitis
Sosi was enjoying the October holidays in 2021 after starting primary one at Donibristle Primary in Dalgety Bay when once again she felt unwell.
Amy said due to her condition, Sosi is particularly vulnerable to bacterial infections.
She said: “We were going on a Halloween foraging hunt.
“In the car Sosi told me she didn’t feel well and wanted to go home.
“She was very white, like death.
“She had complained of having a headache that morning but at the time I didn’t think anything of it.”
When they got home Sosi started vomiting and that afternoon Amy’s husband called the doctor.
They were advised to phone 999 and when paramedics arrived, they took her to Victoria Hospital in Kirkcaldy.
Amy continued: “We got to the Vic and it was there the doctor said to me ‘we think this is meningitis.’
“Hearing that word just put the fear of god in me.
“I just remember my legs feeling like they were going to go from under me.
“I will be forever grateful to one of the nurses there because straight away she knew what it was and had the drugs ready to go.
“It’s those minutes which really count.
“You have to be quick with meningitis. I am so thankful the staff acted as quickly as they did.”
Sosi spent a few days in hospital and went on to be treated as an outpatient with antibiotics.
Becoming ill with strep A
But just when it seemed the worst of her ill-health difficulties were over, little Sosi became unwell once again in February this year.
She developed a high temperature and the side of her face was very red.
Amy said: “She had got cellulitis which is one of the complications associated with invasive strep A.
“But we managed to get her to the Sick Kids Hospital and one of the consultants there was on the ball and knew it was invasive strep A.
“She acted quickly to get her on the right cocktail of drugs and antibiotics she needed.”
A ‘very resilient’ little girl
Amy said she is really proud of her daughter who has proved to be very tough.
She said as a family they have come through some really challenging times.
“The amazing thing about Sosi’s body is that even though she has been remarkably sick, she has bounced back incredibly well.
“She is very resilient – both physically and mentally.
“Sosi will tell me that it is unfair [that she has this condition] but I always say to her that it makes her stronger.
“She has faced all these rotten challenges but I remind her that she is in a brilliant family with lots of support.
“We get through the hard times together and I am just so proud of her.
“She is such a resilient, confident, articulate little girl.
“She is remarkable.”
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