About The Book

So Nichola, TAPS? What exactly is it and why write a book?

“I wanted what happened to us to be a story of hope for others. When I found out the boys had TAPS there was next to nothing available at that time that was positive to find anywhere, it was terrifying. So with the book I want, and hope, to increase awareness and knowledge, make the condition less scary to others and let other parents of unborn TAPS twins know that they aren’t alone. My boys survived, it IS possible. But it’s not just awareness for parents, it’s awareness for health professionals too. So many babies die because this condition often doesn’t get picked up as it’s not routinely screened for”

Why is that?

“There is still so very little known about TAPS, it’s a relatively new disease and can often be misunderstood or misdiagnosed and worse, missed completely. TAPS is a condition that can affect identical twins but, unlike with TTTS the mum doesn’t get any physical signs to indicate there’s an issue. Because it’s still not routinely checked for and babies are dying. 3-5% of identical twins are documented as suffering but they think as many as 63% of cases are being missed before birth and due to lack of routine testing the actual number of identical twins suffering is unknown. Therefor the number of babies dying in utero from TAPS is unknown. The number of babies being left with, in some cases, severe long term implications due to undiagnosed TAPS is unknown.

What we do know is that this shouldn’t and mustn’t happen.

So how did they find out that your boys had it?

“Because of having identical twins my pregnancy was deemed “high risk” and would therefore need a lot more monitoring and care. I had bi monthly ultrasounds then at week 18 they picked up a size difference so they thought it could be TTTS – Twin to Twin Transfusion Syndrome and I was sent from the Isle of Wight to Southampton for further checks. It wasn’t TTTS but they continued monitoring and at 25 weeks did an extra check on the baby’s MCA (Middle Cerebral Artery) called an MCA Doppler. They knew something was wrong and I was sent straight to St Georges, London where it was confirmed it was TAPS; “if there hadn’t have been a size difference, they never would have checked and I’d have lost both babies”

So how does it affect the twins?

“With TAPS, where the babies share the placenta one baby becomes a “donor”, giving up and receiving less red blood cells. Unfortunately this can lead to severe anaemia, heart failure and ultimately, in severe cases, the baby won’t make it without treatment.”

The other twin is the “recipient” and receives all the red blood cells. This can lead to a thick and sluggish blood flow that causes blockages, clots and thrombosis, a condition called “polycythemia”.” This too can be fatal.

But there’s treatment available? Operations they can do?

“When Asher began showing signs of cardiac distress I had three options given to me as the babies were too small to deliver at the time. The first was laser surgery to sever and block some of the arteries in the placenta so that Asher would stop giving all the red blood cells to Leo. The second was a blood transfusion into the stomach for Asher or to simply do nothing and hope. We went with the surgery”

And they could operate on the babies inside you?

“It’s so amazingly clever what they can do, x these fetal surgeons are wonderful people. I was awake throughout, numb from the chest down and could see it all on screen. The surgeons, after sedating the babies so that they wouldn’t become distressed had to go in, find the tiny veins connecting the babies and cauterise them with a laser.

That’s incredible! And, needless to say, it obviously worked?

“The operation was a great success, more than anyone had hoped, both boys were responding well and their vitals had settled. It was now just a waiting game to see if the MCA levels changed. Miraculously every subsequent scan just got better and better, positive vitals and healthy hearts. The boys carried on growing but then my waters broke at just over 28 weeks!”

28 weeks sounds a bit early?!

“Yes, just a little! Both boys were still really small, not even 2 pounds each so I had to try and keep them in for as long as possible and managed another 9 days! The boys had survived TAPS as far as their bloods were concerned now they just had to get through neonatal! You’ll have to read the book for that rollercoaster. But they were true premmie warriors and not just survived but thrived!

So as far as TAPS is concerned the boys were ok? No side effects or complications?

“Sadly no, TAPS twins especially spontaneous TAPS are prone to neurodevelopmental impairments and deafness. Due to the lack of routine checks, babies are born without the diagnosis and so the longterm health issues can be much worse. Even though our TAPS was picked up, it was severe. Both boys are behind with their gross motor skills and Asher (the donor baby) has an issue with his left hand side, due to some potential Brian damage. They both get regular check ups, physio to help with their gross motor skills, occupational therapy, to gauge their fine motor skills and Asher is being monitored carefully. Having said all of this they are happy, cheeky, beautiful boys, who enjoy life. And most importantly they are here!

That’s incredible! Where we’ve focussed on the TAPS mostly in this piece we’ve barely touched upon how all this affected you all emotionally, or how the pandemic restricted everything at the time. The boy’s extended stay in neonatal, all that time spent in various hospitals, all the travel, tests, operations and procedures, It’s just mind blowing!”

“It was certainly a roller coaster that’s for sure, for our parents, Pete, Sebby as well as for me! Having to separate was hard.

But, to finish, I can’t begin to thank the staff at St Marys, The Princess Anne and St Georges in London anywhere near enough. The comfort, kindness and support they showed was a massive part of what got me through it all, especially considering that I was only allowed to see my family on a video call at the time!

I just hope this book helps people, parents as well as the professionals. More research still needs to be conducted, more tests that help screening for a proper and correct diagnosis. Most importantly, I hope this book can help save lives.