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Mum publishes book to raise awareness of rare medical condition

A mum of three has written a book to raise awareness of a rare condition and to commemorate the work of staff at St George’s hospital after they saved her twins’ lives weeks before birth.

Nichola Luther launched her book yesterday, TAPS, Identical Twins and COVID – A Story of Surviving, which documents the life of a mother in lockdown who gave birth to her babies with a rare condition.

At 25 weeks, Nichola’s babies got diagnosed with TAPS (Twin Anaemia Polycythemia Sequence) which had her unborn children at risk of their life.

She said: “The staff at St George’s saved the lives of my boys. 

“They work in a way that makes you feel that you are in safe and secure hands. 

“They give you hope. Without the staff and facilities at St George’s, we would have lost one or both of our gorgeous boys. We will be forever grateful.”

Nichola plans to give the funds to Twins Trust Centre and Clinical Excellence at St George’s as they are the reason her babies are alive today.

It is said that more than half of TAPS cases can go unnoticed before birth which either results in death or long-term damaging conditions.

Shauna Leven, Chief Executive Officer of Twins Trust, said: “TAPS does not usually have any external symptoms. 

“It’s important for parents-to-be to attend appointments and scans so healthcare professionals can monitor for any signs of TAPS. 

“Twins Trust has resources to help parents understand the condition and advocate for the care they need.”

Nichola underwent a fetoscopic laser procedure to treat her babies and following close monitoring and a successful surgery, she gave birth to two healthy boys.

St George’s in Tooting is one of the only five centres in the UK that provide this treatment.

The condition is so rare that most pregnant women wouldn’t have heard of it.

Nichola said: “When I found out the boys had TAPS there was next to nothing that was positive to find anywhere, it was terrifying. 

“I wrote the book to make the condition less scary and let other parents of unborn TAPS twins know that they’re not alone. 

“My boys survived. It is possible.”

Her book aims to raise awareness of the condition and details a success story to show that it doesn’t always have a negative outcome.

Nichola and her partner Pete are continuing to share their story and hope research into TAPS improves with the funding raised from the book.

For more information on Nicholas story or to buy the book visit: https://tapstwins.co.uk/

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