Touching Lives - September 2014
Better treatment for tiny twins
In TTTS, which estimates suggest affects around 10 per cent of identical twins in the womb, blood moves from one baby to the other via connections in their shared placenta. One twin can become dangerously short of fluid and the other overloaded. The condition puts babies at risk of premature birth, death or disability. One of the first signs of this syndrome is when the babies grow at different rates. But throughout Laura’s pregnancy, her twins were always identical in estimated weights. Every two weeks Laura watched her girls growing and gettingstronger. “I felt like the luckiest girl in the world,” she recalls.
The 20 week scan revealed that Isabella had a rare abnormality, congenital cystic adenomatoid malformation (CCAM), which meant the lobe of her developing lung contained cysts. Most often, the cysts do not grow rapidly or at all so cause no problems. Once this was explained to Laura and Ryan their minds were put at ease. A caesarean section was booked for 36 weeks. The delivery day arrived as scheduled, but tragically their twin daughter Grace did not survive the birth. TTTS had developed at this late stage. Grace had become critically short of fluid and died.“We didn’t know how to feel happy for our surviving baby girl, Isabella. We felt empty, lost and angry,” Laura says. “We spent time with Graceafter she was stillborn, kissing her, taking photographs and making the only memories we would ever have.”
Isabella’s birth was not without complications. She was resuscitated and transferred to a special care unit where she stayed for three weeks. “To not be able to take her home with us and try to fit in with visiting hours, all whilst writing funeral invitations from her cot, was sickening. "In the very early days I found it difficult to bond with our surviving twin, Isabella. I had spent an entire pregnancy preparing for the safe arrival of our two beautiful girls and that was taken away from us over night,” she continues.
Two years on, Laura admits: “We still have difficult days but they are less frequent. We live our life including Grace, we talk about her frequently and have mementos around the house which make us smile.”
Isabella has a suspected bicuspid aortic valve in her heart which still requires regular hospital check ups, but has already impressed her parents with her fighting spirit.
After open lung surgery at just six months old to remove the cysts she developed due to CCAM, Isabella came home just two days later. Having each other has been a
constant source of support for Laura and Ryan, who are getting married at the end of this year. And having a baby son, Blake, was “our rainbow after the storm,” says Laura.
Setting up their own non-profit organisation ‘Our Saving Grace’ has also helped the family. The group organises teams of befrienders to help families who have lost one or
both of their twins to TTTS. In August this year Laura and Ryan cycled in memory of Grace from Bristol to London on the Action 100 ride for Action Medical Research. “We did the ride because we know we can never change what has happened to us but we can, and we will, change it for other families like us,” Laura explains. Grace will be mentioned in the marriage service, in the speeches and throughout Laura and Ryan’s wedding day. “She is held by everyone in their hearts if not in their arms,” says Laura.
Dr Christoph Lees of Queen Charlotte’s and Chelsea Hospital, Imperial College, London, is in the laboratory stages of developing a new treatment for babies with twin-twin transfusion syndrome (TTTS) using high intensity focused ultrasound. The aim is to stop blood moving between identical twins in the womb by blocking blood vessels in their shared placenta.
Currently, women whose babies develop TTTS may be offered laser therapy which, although it boosts babies’ chances of survival, involves potentially risky surgery in pregnancy and possible complications including miscarriage, premature birth and infection.“We believe this new treatment could be safer than laser therapy,” Dr Lees says. “It could mean babies could be treated earlier in pregnancy, hopefully improving their chances of survival and escaping disability.”
Laura fully supports Action’s research into this new treatment. “We think the research funded by Action Medical Research into TTTS is brilliant. Any treatment that may effectively be able to offer the same, if not higher, survival rates for babies without the added complications of surgery would be a breakthrough with worldwide benefits. We will continue to support causes such as this in the hope that one day the risks for an identical twin pregnancy are minimal when compared with current statistics.”