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
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
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
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
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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