A HUTHWAITE mum who lost an unborn baby to a rare syndrome which left its twin with serious health problems is holding a special event to raise awareness about the condition.
Amy Shaw (25) found out her identical twin girls had ‘twin to twin transfusion syndrome’ when a scan was carried out after she went into premature labour at just 26 weeks.
The unusual condition meant that one twin died in the womb while the surviving twin Bella, now two, has many resultant health complications.
Said Amy, of New Street: “They found that one of the twins had a hell of a lot of fluid round her and was a lot bigger than the other twin who was stuck out on the side.
“My abdomen was really big and shiny and you could see her back pressing through.”
Doctors at King’s Mill Hospital told Amy and her husband Andy (25) that they had never seen a case of twin to twin transfusion syndrome before and referred them to specialists in Birmingham and Nottingham.
The rare condition only occurs in ‘monochorionic’ identical twins - those that share a placenta - and when the placenta contains fused blood vessels which connect the circulations of the twins.
It results in an imbalanced flow of blood from one twin to the other, with the twin that loses blood becoming the ‘donor twin’ and the one that receives extra blood the ‘recipient twin’.
The specialists said that they wanted to keep Amy pregnant for as long as possible to allow Bella - the smaller donor twin - to have the best chance of survival.
Amy was closely monitored at both Birmingham Women’s Hospital and Nottingham’s Queen’s Medical Centre and some of these tests showed that Lily had serious heart problems caused by all the blood flowing through her.
Then suddenly, at 28 weeks, Lily’s heartbeat could not be detected and she had sadly died.
“It was shocking because she had got so far,” said Amy, who has two other daughters Naomi (5) and Phoebe (4).
“They said that once one died there was quite a high chance of the other one dying.”
Devastated by their loss, Andy and Amy were then told that there was also a chance that Bella could be brain damaged.
“I was praying ‘let her live if she’s going to be ok’,” said Amy.
Luckily Bella had not suffered brain damage and the plan was for Amy to have a Caesarean four weeks later.
She said: “It was so mentally draining. I couldn’t look for the future because I didn’t know what it was going to be like.
“I didn’t know if I would even have a baby then because I couldn’t trust anything once one of them had died.”
At 31 weeks, Amy went into labour and gave birth to Bella, who weighed 3lb 5oz, and then to Lily.
“Bella cried when she was born which I didn’t expect because she was so early,” she said.
“But I knew then another baby would come out and she would not cry and that was horrible.”
Things got worse for Andy and Amy when at just a few days old Bella was diagnosed with life-threatening kidney failure but she pulled through and was allowed home after six weeks in hospital.
The twin to twin transfusion syndrome has left her with a mild form of cerebral palsy, has hypermobility, has some lung damage and will need a kidney transplant in the future.
“It all comes from the twin to twin, but to look at her you would not think there’s anything wrong,” said Amy.
The family all talk about Lily because Andy and Amy think it is important to acknowledge that she was part of the family.
“It’s hard for Bella because she hates being on her own,” said Amy.
“I believe that I have to be honest with her and though she’s only two I don’t want her to grow up thinking she was a single pregnancy.”
Now Amy wants to increase awareness about twin to twin in an effort to make something positive come out of the situation.
She wants all women pregnant with identical twins to be scanned for twin to twin and is raising money for the specialist team that treated her in Birmingham.
She has organised a charity concert at the All Saints Centre in Huthwaite on 10th March, featuring live music, a buffet, raffle and auction, with tickets priced at £5.
“If I can make a difference to even save one baby’s life, I know I have done my bit and I can tell Bella I have tried,” she said.
l Tickets can be purchased by emailing Amy at firstname.lastname@example.org.