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Publication date:- 2016-12-09

user-generated Headlines and reports on this page = 4 news items.    Page - 2.

Liverpool mum speaks out on lifesaving scheme after twins operated on in womb

A Liverpool Hospital has become the 1st in the North West to support the TTTS Registry; a new scheme aimed at saving the lives of unborn twins. Multiple births charity Tamba has partnered with 9 fetal medicine centres in the UK, including Liverpool Women'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.

Liverpool Women's NHS Foundation Trust is the only centre in the North West supporting the Registry and from 2017 will also be 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.

Dr Surabhi Nanda is a Consultant in Maternal Fetal Medicine at Liverpool Women's NHS Foundation Trust. Hers is 1 of the oldest dedicated multiple pregnancy clinics in England and is also the model used in the NICE guidelines on multiple births.

Dr Nanda and her team help multiple families from a wide area spreading from Liverpool to Lancaster, the Isle of Man, North Wales and up as far as Crewe. She said:- "Not only have we joined the TTTS Registry, but next year we are hoping to offer laser ablation too, so our patients don't have to travel to centres in Birmingham and London for the procedure. We have monthly twin evenings where we explain to women with multiple pregnancies what TTTS is and how the Registry works, so they know they have a lot of support.  By joining the Registry, we hope to be able to monitor what the long-term outcomes are for our patients. In future we will be able to use the data to advise them on the incidences of TTTS and compare our own local statistics to the national standard.  I think the Registry is an absolutely brilliant concept. I'm really excited to be working on a project which will hopefully achieve our goal of reducing TTTS mortalities."

The rare and often devastating condition of TTTS occurs in about 10% to 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 1 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 1st of its kind in the UK. Now 9 centres are actively using the service, including:- 4 Hospitals in London, 1 in Northern Ireland and 1 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 both maternity and neonatal services.  Keith Reed, Tamba's CEO, said:- "Although we've had a great 1st 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. Jayne Sefton and her partner David Smith were distraught when their twin girls were diagnosed with TTTS, early in 2016. Jayne said:- "I had never heard of TTTS before and everyone I spoke to just said 'oh twins, I'd love to have twins' not realising how complicated twin pregnancies can be. I know from speaking to other mums on social media that TTTS outcomes aren't always positive, so I know how incredibly lucky we were. Sometimes TTTS babies can die, or be left with disabilities, so anything we can do to learn more about the condition I am obviously very supportive of."

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