Story
We are raising awareness for Twin-to-Twin transfusion syndrome in memory of our daughter Daisy and all the other babies that have died due to TTTS.
"Well there is definitely a baby infact there are two"! That's the day we were over the moon and found out we were having our identical twin girls Orla and Daisy.
Unfortunately our world was turned upside down 22 weeks Into the pregnancy. We were referred to a specialist in fetal medicine and the girls were diagnosed with TTTS. The next day we travelled across to Birmingham and had to undergo life saving surgery to give them the best chance of survival.
Orla and Daisy made it through the operation but the following afternoon we found out the heartbreaking news that Daisy's heart had stopped beating. This is something we never could of imagined and we will always feel the pain of her loss. We are blessed to have Orla and we know Daisy's spirit will live on in her.
Twin-to-Twin Transfusion Syndrome (TTTS) is a rare, but potentially life-threatening condition that affects about 10-15 % of identical twins who share a placenta, it can also occur in triplet or higher pregnancies. If untreated, 90% of babies are likely to die. Even with treatment slightly increasing these odds, there are still 10 - 20% of surviving babies that are likely to be disabled or have a long term condition.
Blood passes from one twin (the donor) to the other (the recipient) in the womb. In most cases the donor twin may become smaller and anaemic due to not having enough blood supply. The recipient twin becomes bigger and has a higher blood volume, which can strain the foetus’s heart and lead to cardiac failure.
Monochorionic pregnancies should be closely monitored for signs of TTTS. It can progress through the different stages very rapidly.
The most effective treatment is fetal laser surgery to seal off the connecting vessels in the placenta, this stops the sharing of blood with the goal of halting the progression of the condition.
TTTS causes extreme worry and distress to families who are diagnosed and while some babies survive the ordeal, many, sadly, do not. TWINS TRUST are an amazing small charity, and they want to do more to help families who are affected.
We will be doing something Health and Fitness based every month this year to raise money for Twins Trust, because they work with hospitals across the UK, investing in research into TTTS, TAPS, TRAPS and other complicated pregnancies effecting multiple birth pregnancies.
Please join us to drive the change and donate generously.
We hope you can share our ambition to save twin babies’ lives.
We are also raising money for 'Taking baby steps' a local service providing therapeutic support in birth trauma and pregnancy loss. They have been a fantastic support for us. www.takingbabysteps.co.uk (Cash donations)
Thank you very much
Dave, Daniela and Orla