3 March 2022

It’s the start of a new chapter for twin mum Nichola Luther, who has just published her first book, TAPS, Identical Twins & Covid – A Story of Surviving.

The book documents her family’s journey through neonatal care and fetal medicine to overcome illness, separation and unimaginable obstacles during the coronavirus pandemic.

Nichola says her book is a story of hope, and she wants to use it raise awareness (and funds) for TAPS – Twin Anaemia Polycythemia Sequence.

At 25 weeks pregnant, in March 2020 and just as the country went into lockdown, Nichola’s twin boys were diagnosed with TAPS, a rare complication specific to monochorionic pregnancies, where babies share a placenta.

TAPS happens in only 3-5 percent of monochorionic pregnancies, when small blood vessels form in the placenta between the babies, connecting their blood supplies and allowing a slow passage of blood from one to the other. This can cause the baby donating the blood (donor) to become anaemic (low blood levels), and the baby receiving the blood (recipient) to become polycythaemic (high blood levels), which can lead to overload and strain on the heart.

One of Nichola’s boys, Asher, was in cardiac distress in her womb. Nichola, who lives on the Isle of Wight with husband Pete and eldest son, Sebby, said: “We were under Professor Asma Khalil at St George’s Hospital in London. She told us about the laser surgery [to sever the connecting blood vessels] that could be done. She thought that was the best option.

“We had the surgery and that same afternoon, Asma said the vital signs had improved straightaway. The operation went better than expected.”

At 29 weeks plus five days, Nichola went into labour. Luckily Pete was able to get to her side on 4 April, when they welcomed baby Leo, 1lb 15oz and baby Asher 2lb 10oz.

The twins stayed at Southampton Hospital for four weeks, then transferred to special care on the Isle of Wight before going home the following month.

Nichola’s book, launched this year on 3 March to mark International TAPS Day, which is run by The TAPS Support Foundation, tells readers the family’s whole journey.

Nichola said: “I thought I would write it down while I remembered it. I just kept writing it. I thought I would see what happens.”

After some positive feedback on early chapters, she kept going, grabbing minutes here and there to write. She added: “It was a story that needed to be told. I needed to get it out. Once my writing got going, it was flowing.”

The book became a reality following a phone call with Dr Khalil, who also works at the Twins Trust Centre for Research and Clinical Excellence at St George’s Hospital, London. Nichola hoped she could share her story to help others.

“I knew then…it wasn’t just something I had written for my family,” she said. “Mentally it was challenging. It was very painful to remember parts, as they were horrific. I knew it was very important if I was going to write the book to share everything and not hold back. It also helped me work through a lot of the pain that I’d shut to the back of my mind. Knowing your story could potentially help parents and hopefully save babies. That was so important.”

Nichola said that at the time of the twins’ diagnosis, she had struggled to find accounts from parents in the same situation.

She added: “There were no stories of hope to grab hold of, only frightening statistics and incomprehensible research. Things have changed since then with the help of Twins Trust and The Taps Support Foundation.

“But TAPS is still not routinely checked for. A simple test with MCA Dopplers can change this. Up to 63 percent of cases are being missed before birth.”

Nichola wanted her readers to hear the whole story. She added: “I felt like I had to say everything. I didn’t want to hide away, it had to be real.

“I really hope that it gives people some hope, that they feel like they are not alone and that they have the power to ask questions.

“I’m still living with TAPS every day with my boys. It’s important to highlight and know that there are long-term repercussions, but with the right knowledge and help all children can have the best chance of a wonderful life.

“I still can’t quite believe I’ve written a book. To know that I might be able to help one other parent or save one precious baby, then my job is done and it’s all worth it.

“We wanted to be that story of hope. To me, saving babies’ lives is what matters and to do this while raising awareness is key.”

Click here to purchase Taps, Identical Twins & Covid - A Story of Surviving