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Saving lives, supporting families

Mum's blue light campaign to remember her baby

24th August 2017

Our fundraisers are incredible people and often have incredible stories to tell. One such person is Lindsey Weightman.

Lindsey raised an amazing £545 while looking after her newborn baby Harper, who was two months premature and spent weeks receiving specialist care in hospital. But while she faced the challenges that every new parent faces – getting to grips with nappy changes and feeding schedules – Lindsey knew it should have been double the workload, double the nappies and double the babies.

Lindsey sadly lost her baby girl Summer at 25 weeks gestation after a traumatising battle with TTTS (twin-to-twin transfusion syndrome). The condition occurs in identical twin pregnancies where the babies share a placenta.

“TTTS is a term that all families with identical twin and multiple pregnancies dread to hear,” said Lindsey. “You never think that it'll happen to you and the anxiety throughout a TTTS pregnancy is unbearable.

“We tried everything to save our girls; including travelling to London for laser surgery to divide the placenta.

“We are so thankful to have received the best care under the fetal medicine department at the Royal Victoria Infirmary in Newcastle under Dr. Sturgiss. We never forget how lucky we are to have our happy and healthy surviving twin, Harper, who had only a 40% chance of surviving.

“We wanted to raise awareness and fundraise so more research can be done. We want more families to have good outcomes and support if diagnosed with TTTS.”

Sadly Summer passed away on 19th June 2016, as her share of the placenta was inadequate to sustain her life. However her sister Harper survived and was born two months premature on 13th August 2016. She spent three weeks in a special care baby unit (SCBU) before being allowed home.

In December 2016, as part of TTTS Awareness Day, Lindsey encouraged famous landmarks in her home city of Newcastle to light up blue. They included the Tyne Bridge, Newcastle College, the Millennium Bridge in Gateshead and the Berwick Border Bridge.

As well as raising awareness, Lindsey and her family raised money for Tamba’s TTTS Registry. The registry allows doctors from across the UK to enter data on TTTS babies in the hopes of learning more about the syndrome and improving outcomes for twins in future.

Tamba has partnered with nine fetal medicine centres in the UK to set up the TTTS Registry.

Kings’ College Hospital in London, one of the nine centres entering data, also treated Lindsey’s twin girls and performed her laser ablation surgery.

Keith Reed, Tamba’s CEO, said: “What Lindsey managed to achieve is fantastic – lighting up famous buildings in her local area really helped raise awareness of TTTS.

“Sadly Lindsey’s story isn’t an isolated case and hundreds of families will be diagnosed with TTTS in the next year.

“This is why the TTTS Registry is a vital tool in learning more about the condition, but it can only run with the help of funds to keep it going.”

The rare and often devastating condition of TTTS occurs in about 10-15% of monochorionic (identical) twin pregnancies. It also affects higher order 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 syndrome 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.

Only a handful of clinicians across the UK are able to perform laser ablation surgery on twins - a highly specialist procedure in which doctors perform surgery on the twins’ placenta while they are still in the womb.

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

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.

If you’d like to support the TTTS Registry, please visit https://www.justgiving.com/fundraising/tttsappeal

To learn more about TTTS and download a booklet, visit https://www.tamba.org.uk/ttts/what-is-ttts

Related blogs: Lucy's MarathonSue's QuiltTracey's Story,  TTTS Lights, Valentines Kiss, Rough Runner, TTTS VideoThe Wall.





 

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