If you are carrying identical twins, chances are you will of been told about twin-twin transfusion syndrome (TTTS).
TTTS is a rare, but very serious condition/disease of the placenta that can affect 10-15% of pregnancies where identical twins share a placenta (monochorionic twins). Without treatment, this condition can be fatal for one or both twins.
When identical twins share a placenta, sometimes abnormal blood vessels form in the placenta, this disrupts the flow of blood between the twins. The distribution of blood becomes unbalanced. One twin will receive less blood than the other twin- who is receiving too much.
The twin who receives less blood is called a ‘donor’. Risks include dehydration, reduced urine output, low amniotic fluid which results in poor fetal growth. The twin who is receiving too much blood is called the ‘recipient’. The recipient is also at risk- their system is completely overwhelmed by the extra fluid, and blood, they produce too much urine, resulting in increased amniotic fluid levels. The prospect of heart failure is a possibility due to the strain on the heart from the excess fluid.
Fetal surgery is sometimes required.
THESE incredible pictures show identical twin boys inside the womb at just 22 weeks old.
Detailed facial features and nails growing on their toes can clearly be seen on the photographs, which were taken by surgeons who had to operate before the twins were even born.
For Sarah and Dan Maund, it was a rare chance to see their unborn twins and something most parents will never witness. Far more detailed than a normal sonographer’s scan, the twins’ features can clearly be seen on the photographs.
But the adorable pictures were also a stark reminder that their little boys’ lives were in severe danger. The photographs were taken during laser ablation surgery to treat TTTS (twin to twin transfusion syndrome). They’ve now been released to raise awareness of the condition and encourage people to donate to https://www.justgiving.com/fundraising/TTTSAppeal
TTTS affects identical twins who share a placenta. It can be fatal to one or to both twins or leave one or both twins with disabilities. Laser ablation is often the best way to treat it, but can be a risky procedure.
“I was just blown away when I saw the pictures for the first time,” said Sarah, 35. “But I knew it was bittersweet – we saw these amazing photographs that most parents will never have the opportunity to see. But at the same time, we were still under admission at the hospital and they were still really concerned about the twins.”
The photographs were taken by surgeon and multiple births expert Professor Basky Thilaganathan at St George’s Hospital in London.
He said: “I don’t think all laser ablation surgeons do this, but I think it’s nice to save the photographs and video for the families so that they can see their babies. Sadly for some families, this will be the only chance they get to see them alive, as not all TTTS twins will survive to full term.”
Sarah was under a local anaesthetic, had a relaxant to calm her and was laid flat when they were taken, so she only saw them a few weeks later when Professor Thilaganathan gave the couple a memory stick for them to keep. But her husband Dan was in theatre with her and saw the images on the screen.
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Dan, 34, said: “I watched the whole thing on the monitor – it was amazing. The images were so clear, they were like a normal photograph. I saw Basky putting the camera into Sarah’s womb too.”
TTTS occurs in about 10-15% of monochorionic (identical) twin pregnancies. If left untreated, 90% of these babies will die. Even with treatment, there is only up to a 70% chance of both babies surviving.
The condition affects the amount of blood passing to the twins. The donor baby, in this case Henry, receives less blood from the placenta and can become smaller and anaemic. The recipient baby, in this case Sebastian, gets too much blood which puts a strain on their heart.
Laser ablation surgery can correct this imbalance by sealing off some of the blood vessels in the placenta. It means both babies receive a more equal supply of blood.
Dan, who has been married to Sarah for five years, said: “It was very very scary. I can’t even imagine what it was like for Sarah, but for me, when we were in the hospital for the operation, that’s when the emotions started flowing.
“I knew I needed to be as strong as I could for Sarah – that’s all I could really do.”
The couple had an agonising six hour wait for a scan to see if the procedure had worked and to find out if both twins still had heartbeats. “It was the longest six hours of my life,” said Sarah. “We got in the room and they did the scan and yes, both twins were doing okay. It was such a relief.”
But the boys weren’t out of the woods and they had to wait for another scan at their hospital near home to see if the twins were still surviving.
“That was the hardest week, the waiting,” said Sarah. “Of course you feel kicks but you don’t know if it’s one baby or two. At the scan we found out both babies were still alive, thank goodness, but we still had issues with the amniotic fluid levels. Sebastian had too much fluid around him whereas Henry was almost shrink-wrapped because he had so little.”
From then on Sarah kept up her regular scan appointments every few days and by 25 weeks the TTTS had resolved itself. But a few weeks later she was diagnosed with intrauterine growth restriction, which ultimately caused her to go into early labour.
The boys arrived on 14th September 2014 by emergency caesarean section at 32 weeks – five weeks early for a twin birth.
They were sent to the special care unit but after about four weeks in hospital they were allowed home.
They now enjoy playing cars with older brother Alfie, aged 3, and getting into mischief.
Speaking from her home in Blandford Forum in Dorset, Sarah said: “When I look at the womb photographs and I look at the boys now, I can’t believe how far we’ve all come.
“It was an incredible gift for Professor Thilaganathan to give us.
“We were given a 1 in 3 chance of both of them surviving, so we know how lucky we are to have two happy, healthy survivors.
“But I know from hearing stories from other parents that it isn’t always a happy ending to the story, which is why research into TTTS is so vital.
“We’d encourage people to give what they can to Tamba’s TTTS Registry, so doctors can learn more about the condition and improve the chances of more babies surviving in future.”
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UK-wide charity Tamba (Twins and Multiple Births Association) set up the TTTS Registry in December 2015. Since then, nine hospitals have signed up to the Registry and are now inputting data about their patients into the system. This data will be used to learn more about TTTS and increase the chances of twins surviving the condition in future.
Tamba’s CEO Keith Reed said: “Without someone doing research and tests in the first place, we wouldn’t have the laser ablation surgery today. Now we need more research so the chances of survival can increase and we see more twins surviving TTTS in future.
“But sadly all this comes at a price and we desperately need money to continue funding this project. I’d urge anyone reading this to give what they can and donate to https://www.justgiving.com/fundraising/TTTSAppeal to save more tiny lives in future.”
FEATURED IMAGE: PIXABAY
IMAGES AND VIDEOS ON PAGE: COURTESY OF TAMBA