A Belfast couple whose identical twin boys died due to a condition called Twin to Twin Transfusion Syndrome will have the local landmarks lit up blue in December.
Karen and Gavin Taggart received the heart breaking news their unborn sons Daire and Odhran had succumbed to the condition at their 23 week scan back in 2007.
Initially their twins were diagnosed as being non-identical after Karen had asked at her 15 week scan but she says she was misdiagnosed at the time. By raising awareness of TTTS the pair hope that people will be educated on the disease and the risks associated with multiple pregnancies.
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The condition involves an imbalanced flow of blood from one twin to the other and it is believed to affect as many as one in 1,000 identical twin pregnancies.
As the pregnancy progressed Karen says she began to suffer severe discomfort and pain and had to wear a support belt and use crutches.
She said: "At times I could not walk and found it difficult to breathe. I telephoned the hospital on several occasions explaining how I felt, stating I was pregnant with non-identical twins but was told I would have to wait between four and six hours to be seen and the best thing to do was to take two paracetamol tablets and go to bed.
"The situation changed dramatically when I attended the hospital for my 23 week antenatal check having had six weeks between check-ups and a doctor asked if I was sure my dates were right as I was so big."
During her scan it was confirmed that the twins had Twin to Twin Transfusion Syndrome and the couple were told an operation was necessary right away which could only be performed at St. George's Hospital in Tooting London.
Three litres of fluid were removed and Karen had laser surgery to try and balance the blood flow between the twins.
They returned the next morning for another scan.
Karen says she couldn't look at the screen but she knew when she saw a heartbroken Gavin break down and cry that the outcome was not good and that one of their babies had not survived.
The other baby required a blood transfusion later that day whist still in Karen’s womb which was declared a success. Karen was discharged back home that same evening with the journey back to Belfast proving "traumatic".
Both were acutely aware of the dangers of Karen’s waters breaking during the flight. The couple arrived home late in the evening and next morning when Karen woke up she knew instinctively her other baby had also died. She went to The Royal and doctors were able to confirm both twins had passed away.
Karen went home to plan her babies’ funeral and tell their son James that the little siblings he was so excited about sadly had died.
They went back the next day, Karen was induced and gave birth naturally to two little boys who she describes as “simply perfect in every way”.
“The boys stayed with us until the next morning in a little Moses basket and their aunts and uncles and grandparents came in and said hello and goodbye to the boys," she said.
"We buried our beautiful sons with my grandparents and uncle and that was the day my heart broke into pieces and I promised them that I would do everything to ensure that the experience we suffered would not happen to another family."
Now Karen raises awareness regards TTTS in partnership with Mary from the Twin to Twin Transfusion Syndrome Foundation which is based in the USA. Karen reached out to the Foundation after the twins were born.
"I met up with four other women from across USA, Rochelle, Andrea, Kendra from the US and Michelle who is from County Cavan," Karen said.
"We met online via the TTTS support Forum and decided on a face to face meet on our anniversary in New York to remember our twins and to celebrate our lifelong friendship. We talk everyday on messenger and are looking forward to planning our next holiday."
On December 7, landmarks across the world will shine a light on the fight against TTTS including TAPS, SIUGR and TRAP. Locally, Lisburn City Council, Newry Town Hall and Down Leisure Centre will all turn blue to mark the special day.
Karen and Gavin had their rainbow baby Grace two years after the death of their twins but Karen has over the years raised awareness on baby loss and the management of multiple pregnancies. She works in partnership with the Belfast Trust as part the Snowdrop Group to work towards improving bereavement care for families.
Just recently Karen was able to provide a new crib lovingly made by Precision Joinery for the Quiet Room in the Royal Maternity in her boys’ memory.
Karen added: "I hope that by raising awareness of Twin to Twin Transfusion Syndrome babies lives can be saved and the best care given to those families who sadly have to make the journey that we did."
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