Mum of twins launches book to raise awareness of rare condition
A mum has paid tribute to specialist doctors at St George’s for saving her identical twins’ lives in her new book which launches today (Thursday 3 March) on the second annual International TAPS Awareness Day.
Nichola Luther’s identical twin boys’ lives were saved after they were tested and diagnosed with TAPS – Twin Anaemia Polycythemia Sequence – before surgeons were able to operate on them in the womb to save their lives.
TAPS affects 3-5% of identical twins and occurs when small blood vessels form in the placenta between the babies, allowing a slow passage of blood from one baby to the other. This leaves one twin very anaemic and the other polycythaemic (very high blood count) and can lead to extra strain on the heart in both babies, which can make one or both babies unwell and can even be fatal in some circumstances.
Nichola is now sharing her story in her book ‘TAPS, Identical Twins and COVID – A Story of Surviving’ to raise awareness of the condition and her family’s experience in the hope that parents experiencing the same journey see it as a ‘ray of hope’.
She 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.”
Nichola underwent a fetoscopic laser procedure to treat her babies which involved inserting a camera into the womb, then using a laser to seal off the blood vessels that had been allowing blood to leak from one baby to the other. The procedure was a success and, following further monitoring, Leo and Asher were born healthy at St George’s, where paediatric services are rated Outstanding by the Care Quality Commission.
Professor Asma Khalil, Professor of Obstetrics and Maternal Fetal Medicine at St George’s, said: “While there is no cure for TAPS, severe cases like Nichola’s can be treated with laser procedures in the womb and St George’s is one of only five centres in the UK able to provide this treatment.”
Professor Khalil added: “As a specialist centre, we see 350 twin and multiple pregnancies a year including roughly 10 TAPS cases. We have developed a set of criteria to accurately diagnose TAPS as since it is still a relatively unrecognised condition, it can often go undiagnosed without the specialist monitoring like that we carry out at St George’s.”
It is estimated that more than half of TAPS cases are missed before birth and some of those babies sadly don’t survive while those who do can, as a result, have long-term conditions including neurological impairment and deafness.
On top of the initial TAPS diagnosis, Nichola and her husband Pete faced an additional challenge as her waters broke at 28 weeks in March 2020 – at the start of the UK covid-19 lockdown – and she was airlifted from her home on the Isle of Wight for specialist care, meaning she was separated from Pete and her then two-year-old son, Sebastian, for the rest of her pregnancy and the twins’ neonatal care.
Nichola not only hopes to raise awareness but also funds as a percentage of profits from the book will help fund research into TAPS and other TAPS related projects. Twins Trust Centre for Research and Clinical Excellence at St George’s will be the first entity to benefit from this money.
Professor Asma Khalil said: “The majority of pregnant women, even those with twins, won’t have heard of TAPS, as it is so rare. Nichola’s story provides parents and families with invaluable information about this condition and its implications. It beautifully describes the emotional journey parents and families of babies in the neonatal unit have to navigate.”
Nichola 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.”
Shauna Leven, Chief Executive Officer of Twins Trust, said: “Thanks to Twins Trust Centre for Research and Clinical Excellence at St George’s Hospital, Nichola got the high standard of care that she needed.
She added: “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.”
To find out more, including how to attend the launch event and buy a copy of the book, please visit https://tapstwins.co.uk/
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About Nichola Luther and family
Nichola and Pete Luther live on the Isle of Wight with their three sons: Sebastian, aged 4 and twins Asher and Leo, aged 1. Nichola has self-published her book with the aim to raise awareness of the condition and funds for TAPS related research.