SARAH Rose was delighted to find out she was expecting twins in December 2015.
The 40-year-old civil servant, from Surrey, and her husband Kevin, 42, quickly started preparing for their new arrivals – including telling little Ethen, now five, he was going to be a big brother.
But disaster struck when they learnt the boys had a rare syndrome which meant one twin was getting loads of blood… and the other virtually nothing.
Both babies were at risk, with doctors saying if left untreated they stood just a 10 percent chance of survival.
The only option was performing surgery in the womb, which was incredibly risky. Amazingly, the twins had two operations before they were born and Lucas and Isaac, now three, are thriving.
Here, Sarah tells Fabulous Digital their remarkable story of survival:
My husband Kevin and I were over-the-moon when we found out I was pregnant. We were so excited we paid for two private scans as we wanted reassurance that everything was OK before we told our family.
The first scan took place at five weeks and there wasn’t a lot to see apart from a heartbeat. It wasn’t until February at the 12-week NHS scan that we got the news it was twins.
The sonographer at Frimley Park Hospital in Surrey shocked us when she confirmed it. I’ll never forget her words… “Congratulations you’re having twins.”
The syndrome was so severe they were likely to die within two weeks. I could barely take it in
Being identical, we were then booked in for scans every two weeks from 16 weeks.
On March 22, I took my mum to our 18-week scan as Kevin was at work. I didn’t anticipate anything being wrong But that day our world was turned upside down.
One of the twins was seen to have a large amount of amniotic fluid whereas the other had virtually none. The doctors told us they were concerned the babies were suffering from an illness called twin-to-twin-transfusion syndrome (TTTS).
What is twin-to-twin transfusion syndrome?
According to the NHS TTTS affects identical twins who share a placenta.
The NHS said: “It’s caused by abnormal connecting blood vessels in the twins’ placenta.
“This results in an imbalanced blood flow from one twin (known as the donor) to the other (recipient), leaving one baby with a greater blood volume than the other.”
It affects around 10-15% of twins who share a placenta and can have serious consequences.
TAMBA – the Twins and Multiple Births Association, explaining the syndrome, said: “A lack of blood supply can affect the donor twin’s growth so they are smaller than average.
“The recipient twin is usually larger and has a higher blood volume, which can strain their heart as it works harder to cope with the extra blood supply.
“To compensate for the excess blood, the recipient twin often produces a large amount of fluid. In contrast, the smaller donor twin can become stuck against the uterus wall with little surrounding fluid.”
Sent straight to St George’s Hospital in Tooting, south London, I was terrified as I called Kevin.
There we received the devastating news they did have the syndrome and it was so severe they were likely to die within two weeks. I could barely take it in, I was so shocked.
We were told we could have laser treatment which would take the current odds of both twins surviving from 10 percent to 80 percent.
We’d already fallen in love with them both and didn’t hesitate for one second to agree for the surgical route. But it wasn’t simple.
One of them might die, they could be born prematurely and disabled. We drove home completely devastated
There were risks associated with the surgery. We could lose them both and I could go on to have a miscarriage.
One of them might die, they could be born prematurely and disabled. We drove home completely devastated.
The following morning when we drove to St Georges, I was physically sick with worry. I was so scared that I was going to lose our twins.
We were prepared to do anything we needed to help them survive. But we knew surgery was the only route.
On March 23 we went straight to the hospital for 7am. The surgery was so clever. I was given local anaesthetic so was awake during the whole thing, with Kevin beside me in theatre.
They made a small hole in my stomach and then went in with a camera, and then a probe with the laser on.
It was amazing to watch it all happening on the screen next to me; we could see Isaac’s hand, which kept getting in the way. It was a tiny, perfect little hand.
After the surgery the following six hours were the most critical. I stayed on a ward and had to wait before they carried out an ultrasound to see what the early results of the procedure were.
It was the longest wait of our lives. I couldn’t feel the twins move at this stage of the pregnancy so had to wait until the scan to see if they’d survived. Of course, I feared the worst, and was in pieces.
What kind of laser surgery did the boys' have?
According to NICE, the National Institute for Health and Care Excellence, the boys had fetoscopic laser surgery which is the most successful way of treating TTTS.
The proceedure can be performed under local or general anasthetic.
NICE said: “Under ultrasound guidance, a cannula and needle are inserted through the maternal abdominal wall, uterine wall and into the amniotic sac of the recipient twin.
“The needle is removed, and a fetoscope [a device used to obtain information about a fetus] with a thin fibre to carry the laser energy is then inserted through the cannula.
“The fetoscope is used to look at the blood vessels on the surface of the placenta. Vessels that are found to communicate between the twins are then coagulated using the laser.
“After completion of surgery, excess amniotic fluid in the recipient twin’s sac is removed to achieve a normal volume.”
We went into that scan room, certain we were going to get told we’d lost one or both of them. Straight away we knew from the doctors’ faces we were wrong. Both twins had both fought and survived the operation. We were so happy, but also knew we had a long path ahead.
We were then monitored closely and had our next scan we were told that there was no sign of TTTS. The surgery had been a success.
But the good news stopped there. We were then told that they were now showing signs of twin anemia polycythemia syndrome (TAPS), a rare, potentially deadly complication following laser procedure for TTTS that can require further laser surgery.
TAPS occurs when there are unequal blood counts between twins in the womb. So, again, they had surgery, while still in the womb – and again survived.
Further scans followed and we breathed a huge sigh of relief at 28 week when our babies were still alive.
At 32 weeks, due to the complications we’d had during the pregnancy, we were told that we had to have a C-section.
At 4am on 2nd July my waters broke at home in bed. We went to Frimley Park Hospital and straight to the labour ward where I was hooked up to the monitors.
Lucas, weighing 3lb 7oz, was first out at 11.33am – we heard his little cry as he was taken to the resuscitation bed to be given a little help by doctors. Then at 11.35am we heard 4lb Isaac’s cry, who again needed a little help.
They were both in incubators for 10 days in the neonatal intensive care unit (NICU). It was hard as the neonatal nurses tended to do everything for them. As their mum I felt helpless.
I had to stay in hospital for a week and every evening I would come to NICU at 9pm where I was usually the only one there other than the staff.
There’s not one day goes by when I don’t think how each of my twins is a miracle, how blessed we are
I used to lie and hold them both for an hour or two before kissing them goodnight and going to get some sleep.
It was hard not having them both with me on the ward like everyone else, but I knew they were in the best place.
These evenings were such precious times for me. I couldn’t believe the day had actually arrived where I was holding them, alive and well.
Finally, after around two weeks, they were allowed home.
The boys are thriving now, and about to start school later this year, which is amazing.
There’s not one day goes by when I don’t think how each of my twins is a miracle, how blessed we are.
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