The syndrome that nearly took my twins’ lives
Highly rare Twin to Twin Transfusion syndrome nearly cost Charlotte Acosta’s twins their lives, she tells Rosalind Powell
When Charlotte Acosta was pregnant with twins last year, she was told to expect “twice the work”. “But it’s not,” she says, as her identical baby daughters climb up her legs. “It’s 10 times the work. But they are beautiful, I’m really blessed to have them in my life.”
You can see why she feels this way as there was a time when she very nearly lost them. When Acosta, 36, the wife of legendary Cuban ballet dancer Carlos Acosta, 43, was pregnant with the now 16-monthold Maya and Luna, she suffered Twin to Twin Transfusion Syndrome (TTTS), a rare and often devastating condition that occurs in 10 to 15 per cent of identical twin pregnancies.
It happens when babies share a placenta and blood passes from one twin (the donor) to the other (the recipient). If left untreated, 90 per cent of TTTS babies will die. Even with treatment, there is only up to 70per cent chance of both surviving.
Charlotte, who met Carlos at a barbecue in 2004, was in Cuba when she first discovered she was expecting twins in January 2016. It had been a stressful few months. Her husband had just retired after 17 years with the Royal Ballet – “It was goodbye to so many things, his last Swan Lake, his last Manon, his last Romeo” – and was busy travelling between homes in the UK and Cuba establishing his new contemporary dance company, Acosta Danza.
His wife, a writer, and their fiveyear-old daughter Aila, had joined him for a few months when she went for her first scan. Upon discovering she was carrying twins, she remembers “bursting into tears and crying, ‘Noooo’ when the midwife told me,” she laughs.
Twins run in Carlos’s family – his sister had a twin who died at birth – yet almost immediately, he considered them a blessing. Having lost his mother, father and sister within a couple of years of each other, he felt like nature was compensating for his loss. Charlotte, however, felt terrible from the outset – suffering from “all day” sickness and debilitating tiredness. “I could barely put one foot in front of the other. Carrying twins feels like an entirely different experience, nothing is straightforward. Even thinking about the birth…” her voice trails off. “You feel the pressure, and then you worry about how you’re going to cope.”
Four months into the pregnancy, she returned to the UK to have further scans. “I was very emotional at having to leave without Carlos,” she says. “My hormones were going berserk. For Carlos, there is always such a conflict of emotions between duty and the heart, but he has became accustomed to those feelings from quite a young age so has learnt to block them out better than I can.”
In the UK, she was told she would need a scan every two weeks and relied on her mum and brother for support as Carlos travelled. Then, about 18 weeks into her pregnancy, she suddenly developed a new set of symptoms.
“I was enormous, my stomach was hard, I had heart palpitations, my back hurt, something wasn’t right.”
With Carlos, who was in the UK, she went for another scan seeking reassurance, but was referred to the Fetal Medicine Unit immediately. Within the hour, she was under the care of George Attilakos, consultant in fetal medicine and obstetrics at University College Londonhospitals and one of only a handful of surgeons qualified to carry out surgery for TTTS.
“He did a quick scan and explained that the placenta wasn’t dividing the blood supply evenly, Luna, the recipient twin, was taking everything, which was putting a lot of pressure on her organs,” she explains.
“Whereas Maya, the donor twin, was becoming anaemic. She wasn’t getting enough blood supply for her organs to function properly.” Because there was a reduced amount of fluid, the amniotic sac was folding over and she was almost suffocating.
“I went completely numb. I didn’t really know how to cope with it,” Charlotte remembers. Attilakos was confident they could save both babies through laser ablation surgery, a process by which a laser is inserted into the womb and kills the blood vessels causing the imbalance. Charlotte, who was 20 weeks pregnant at the time, knew there’d be a risk of miscarriage with the operation, but that there would be up to a 70per cent chance that both girls would survive if she went ahead. Without it, there was a 90per cent risk that both would die.
She was booked in for the next day and that night she and Carlos talked. “That we might lose them was devastating to him – to us both.”
The next morning Charlotte was given an injection to numb the area before a needle was inserted, through which they fed a laser and camera into the womb, so the whole procedure could be watched on a screen. Despite their mutual anxiety, Carlos, she says, was “completely mesmerised, but I had my eyes closed. I saw a couple of feet but
I was too worried the laser might catch one of them.”
As the operation proceeded, she felt instantly better. “They drained two litres of liquid, so I became much lighter,” she says. “And I felt Maya move for the first time, almost as if she was saying thank you at being freed.”
A healthy pregnancy followed and the girls arrived at 33.5 weeks – delivered by caesarean section by Attilakos, whom Charlotte describes as a “modern day hero. I was so grateful, he couldn’t ever understand our gratitude for saving our girls, and caring for us so well.”
The last year has, she says, “felt like a fog”. “With twins, it’s a two-man job. You’re both up in the night – he’s changing one nappy, I’m changing the other. Also I was tandem feeding and when they began crawling, it was chaos.” They have had help from a full-time nanny, and Aila has been “amazing” but at times frustrated with her parents, “which is understandable because there are times when neither of us are available to her.”
Carlos continues to travel, and Charlotte is used to his absences and doesn’t resent the demands of his career. “I wouldn’t wish for it to be any different. A lot of artists belong to the world as well as their families, and you have to share them,” she says generously.
And whatever the demands of his career, Carlos remains a family man. “We will always be first, and I feel very secure with him because I know how important we are to him.”
She suspects he wouldn’t mind another baby – particularly a boy. “I’m like, ‘When men are able to give birth, maybe we’ll have another one,” she laughs.
‘I kept my eyes closed, I saw feet but I was worried the laser might catch one of them’