24 October 2016

St Michaels Hospital first in South West to support TTTS Registry

St Michael's Hospital has become the first in the South West to support the TTTS Registry - a new scheme aimed at saving the lives of unborn twins.

Multiple births charity Tamba has partnered with nine fetal medicine centres in the UK, including St Michael's Hospital, to set up the Registry. Leading clinicians at the hospital are now entering data into the TTTS (twin-to-twin transfusion syndrome) Registry about families who are diagnosed with the devastating condition. 

St Michael's is the only centre in the South West currently supporting the Registry and also offering laser ablation - a highly specialist procedure in which doctors perform surgery on the twins' placenta while they are still in the womb.

It's hoped the data collected will help improve TTTS outcomes in future and save more families from its life-changing effects.

Consultant in fetal medicine at St Michael's Hospital Mr Mark Denbow's interest in TTTS spans three decades. Mr Denbow and his team take on patients from as widely spread as Swindon and Bath in the east, Gloucester in the north, Truro in the South and South Wales in the west.

He said: "TTTS is one of those conditions that we are constantly learning new things about. We really hope we can use the data to log the range of clinical directions that are taken and to see if there are any trends in terms of outcomes.

"We always tell our patients what we are using their data for and how it may help families like theirs in future.

"Many families are very supportive in helping us find out more about TTTS. It is especially rewarding when the families on whom I have performed laser ablation return with their babies to show me how they're getting on."

The rare and often devastating condition of TTTS occurs in about 10-15% of monochorionic (identical) twin pregnancies. It also affects higher multiple pregnancies which include monochorionic twins. If left untreated, 90% of these babies will die. Even with treatment, there is only up to a 70% chance of both babies surviving. Of those that do survive, there is a chance they will suffer from a disability or health condition.

The condition occurs when blood passes from one twin (the donor) to the other baby (the recipient). In most cases the donor twin becomes smaller and anaemic. They also usually have a reduced amount of amniotic fluid and can become 'stuck' to the side of the uterus. The recipient baby becomes bigger and the higher blood volume puts a strain on their heart.

Dr Matthew Jolly, National Clinical Director for Maternity Review and Women's Health at NHS England, said: "I'm delighted to see the TTTS Registry is now underway. Recording accurate data on high risk multiple pregnancies will be key to improving outcomes for multiple birth families in the future. I hope even more hospitals across the country sign up to the registry and look forward to many of the remaining clinical dilemmas being answered."

The TTTS Registry was officially launched in November 2015 - the first of its kind in the UK. Now nine centres are actively using the service, including four hospitals in London, one in Northern Ireland and one in Scotland.

Tamba (Twins and Multiple Births Association) is also keen to expand the project and see the Registry rolled out to other hospitals which perform maternity and neonatal services.

Keith Reed, Tamba's CEO, said: "Although we've had a great first year and we are really pleased with the number of fetal medicine centres using the Registry, we are still only skimming the surface in terms of the data we could potentially be collecting.

"In order to build the best possible picture of TTTS cases in the UK, and help see which treatments offer the best possible outcomes, we need more hospitals with fetal medicine departments to sign up."

The Registry includes details such as the gestational age at diagnosis and the weight of the babies and their outcomes, so doctors can see what the best practices are and why. It can also be used by doctors to compare cases, so they can see how other twins in similar situations were treated and what happened to them.

Jo O'Halloran and her husband Finbarr were devastated when they were told their twins had TTTS when they went for a scan at St Michael's Hospital.

Jo, who lives in Backwell, said: "We had so many complications, scares and hospital treatments during the pregnancy and afterwards, it was such a scary time. So we know how lucky we are that the girls now don't have any health concerns.

"I know how traumatic the whole thing was, so if the TTTS Registry can help other people and make treatments more effective, then it is obviously an excellent thing to do. I'm really glad St Michael's is involved."

For more information on TTTS, click here.

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