Mother raising awareness of rare condition by lighting up landmarks

An Ashington mother who lost one of her twins is backing an initiative to raise awareness of the rare condition.

Tuesday, 6th December 2016, 1:13 pm
Updated Tuesday, 6th December 2016, 2:50 pm
Harper Weightman whose twin sister Summer died as a result of TTTS.

Lindsey Weightman sadly lost her baby Summer at 25 weeks gestation after a traumatising battle with TTTS (twin-to-twin transfusion syndrome).

Summer’s twin Harper survived but now Lindsey is keen to help raise awareness of the condition.

Lindsey Weightman with Harper whose twin sister Summer died as a result of TTTS.

A host of famous landmarks – including the Tyne Bridge, Millennium Bridge, Newcastle College and the Berwick Border Bridge – were lit up blue on Wednesday to mark TTTS Awareness Day to raise money for Tamba’s TTTS Registry.

Lindsey said: “TTTS is a term that all families with identical twin and multiple pregnancies dread to hear.

“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.

Lindsey Weightman with Harper whose twin sister Summer died as a result of TTTS.

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

“We are raising awareness and fund-raising so more research can be done. We want more families to have good outcomes and support if diagnosed with TTTS.”

Summer passed away on June 19, as her share of the placenta was inadequate to sustain her life. However, her sister Harper survived and was born two months premature on August 13, 2016.

She spent three weeks in a special care baby unit (SCBU) before being allowed home to mum and dad.

Multiple births charity Tamba has partnered with nine fetal medicine centres in the UK to set up the TTTS Registry. Leading clinicians are entering data into the Registry about families who are diagnosed with the devastating condition.

Keith Reed, Tamba’s CEO, said: “What Lindsey has managed to achieve is fantastic – lighting up famous buildings in her local area will hopefully really help 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.”

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

The rare and often devastating condition of TTTS occurs in about ten to 15 per cent of monochorionic (identical) twin pregnancies.

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. The recipient baby becomes bigger and the higher blood volume puts a strain on their heart.

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.

To support Lindsey’s fundraising for Tamba’s TTTS Registry visit