'If the surgery on our twins went wrong, we'd have to choose which baby to save.'
Sitting together in Southampton Hospital, Nichola and Pete Luther faced some stark decisions.
At 25 weeks pregnant with twin boys, Nichola had been told that her babies had Twin Anaemia Polycythemia Sequence (TAPS) a rare – and potentially fatal – disease, meaning one twin was ‘donating’ too many red blood cells to the other.
As the babies were still too small to deliver, doctors needed to do something urgently.
"We knew they wouldn’t survive outside the womb and Asher was already in cardiac distress, stage three TAPS and wouldn’t make it without treatment. There are four options to try but as yet no cure," says Nichola, 42, already a mum to Sebastian, now three.
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"Laser surgery would sever the connections between the babies and stop the red blood cells passing through to the recipient baby. Or we could try a blood transfusion to the anaemic baby.
"If one baby becomes too poorly then you may have to decide to selectively choose which baby to save."
The other alternative was to do nothing and simply watch and wait.
"It was the most horrific news to have to deal with and I did a lot of crying. Not much is known about TAPS because it’s so rare and doctors have only known about it for fifteen years. But after asking a lot of questions, we decided to go ahead with the laser surgery.
"It seemed like our best chance."
Occurring in around 3-5 per cent of identical twins (who share a placenta), TAPS is often only picked up via checking the MCA doppler, which can detect blood flow differences to the Middle Cerebral Artery (MCA) in the babies’ brains.
This is done using normal ultrasound equipment but these checks are not offered routinely to pregnant women and it was only thanks to the eagle eye of foetal consultant Prof Asma Khalil that a diagnosis was eventually made.
By 25 weeks, one of Nichola’s twins was almost a third bigger than his brother. If left untreated, the donor twin can become chronically anaemic while the other becomes polycythemic (too many red blood cells which can lead to heart issues or blood clots).
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"The operation took around an hour and a half from start to finish and it couldn’t have gone better," says Nichola. "I was told that the surgeons were very pleased with the outcome but my job now was to go home and rest and concentrate on keeping those babies inside for as long as possible."
But the babies had other ideas. At just over 28 weeks, Nichola’s waters broke while at home on the Isle of Wight. The local hospital realised it would not be well equipped to look after such a problematic pregnancy, so the couple were taken via Coastguard helicopter to Southampton.
"It was right at the start of the lockdown, when no family members were allowed into hospitals with patients," says Nichola.
"It was very upsetting because it suddenly dawned on me that if I was going to be spending weeks in the wards either pregnant or with my newborns, I’d be on my own.
"Ten days later on 4th April 2020, I had an emergency c-section because my heart rate had gone up and one of the babies was in distress.
"Thankfully, Pete was allowed to be with me when they were born – Leo was 1lb 15oz and Asher was 2lbs 10oz – but as they were rushed off to resuscitation he never even got a glimpse and didn’t meet them for over four weeks.
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"I remember being wheeled in to see my babies and thinking their little hands and toes were all so perfect, but they were so tiny. Of course, I was scared. I was on my own and wondered how I was going to manage, but you simply do whatever a mum has to do."
Thankfully, the babies thrived while in hospital and were able to be transferred to a hospital on the Isle of Wight after four weeks before being able to go home just seven and a half weeks after their birth.
TAPS can cause problems with hearing loss and neurological development and while both boys are being tested for future problems, they’re both doing well.
"They’re fifteen months old now and still small - and while cognitively they seem fine, their motor skills are a little behind," says Nichola.
"They’re both such characters. Leo is feisty and Asher is such a chilled out baby, with no fear at all. Sebby thinks they’re great but wants them to grow up so he can play with them."
Thanks to her incredible experience, Nichola is now helping The Twins Trust Centre at St George’s Hospital raise awareness of TAPS.
"We are so very lucky that it was picked up so early by Prof Khalil and her amazing team and I want to be that story of hope for other parents facing a similar diagnosis," she says.
"I also want to raise awareness of the MCA doppler scan – it’s such an easy, non-invasive test to ask for if you’re concerned. And it might mean the difference between life and death for your twins.
“I’d like to say thank you to Prof Khalil and everyone involved in saving our beautiful boys. We will be forever grateful.”
For more info: www.twinstrust.org
Nichola’s book: Taps, Identical Twins and Covid is out soon.
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