When Sarah* was 20 weeks pregnant she looked as through she was nearing her due date. “I was so big, I looked as if I was 40 weeks pregnant,” she says. Sarah put her large belly size down to carrying twins; her 20-week scan, however, revealed something worrying was happening with her babies.

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“There was a complication called twin-to-twin transfusion syndrome, which ended up with me in hospital at 21 weeks having three litres of fluid drained,” Sarah says. Twin-to-twin transfusion syndrome is when blood moves from one twin to the other, often resulting in one baby having too little blood, and the other, too much. Left untreated, it can lead to the death of one or both babies.


Thirty ultrasounds, a plane trip to Sydney to have laser surgery, and another three litres of fluid drained later, Sarah was told that she was going to have perfectly healthy identical twin girls. “That was the best thing I had heard in a long time,” she says.


When the big day arrived, Sarah, her husband and their son were so excited to meet the new additions to their family. “After everything we had been through with the pregnancy, we just couldn’t wait for this moment to meet our healthy girls,” she says. But Sarah’s excitement didn’t last long.




“When the girls were born they seemed to look different,” Sarah says. “They had deformed ears and deformed facial bones.” Sarah and her husband weren’t concerned at the time; they put the girls’ unusual looks down to being born at 36 weeks.


The twins were immediately taken to the special care nursery while Sarah recovered. “We had doctors coming in and out saying that they thought the girls had a syndrome,” Sarah recalls.


Three days after the twins were born, Sarah’s small hospital room was filled with doctors, paediatricians, craniofacial doctors, and counsellors who explained that Sarah’s twins had Treacher Collins Syndrome, a rare condition where the skull, cheek and jawbones don’t develop properly, causing facial defects and hearing loss. It affects about one child in every 50,000.


Sarah was overwhelmed with the news. “My first thought was ‘Why me? What have I done to deserve this?’” she says. “I’ve had such a hard life. I’ve lost my Mum, Dad, Nanna and Pop. I’ve done nothing wrong to deserve this.” So she coped the best way she knew how.


“I went straight into shut down and blocked everyone out of my life,” she says. “Everyone was trying so hard to be supportive, but at that stage whatever anyone said to me would come out negative. I had people say, ‘God has given them to you as he knows you will cope,’ and my response was, ‘Well, I wish he had asked me first’. Others would say, ‘You’re strong, Sarah,’ but there comes a time in your life when you just can’t be strong anymore.”


Sarah’s memories of that time are filled with darkness. “I wanted this to be a dream, but each day it was still there and it got the better of me,” she says. “The doctors told me there was no quick fix for this syndrome. I was heart-broken. All I could think about was my girls being picked on and questioning how I would cope without any support from my extended family.”


When the twins were two weeks old Sarah uttered a sentence that would change her life forever. “I suggested to a counsellor at the hospital that maybe the girls needed to go into foster care,” she says. “Before I knew it, the counsellor had contacted a foster care agency and the ball was rolling.”


The twins were placed in foster care shortly after that conversation. Sarah felt conflicted about visiting her girls once they were in the care of others. “I really didn’t want to visit, but something inside me said I had to,” she says. “I think it came down to the way my parents brought me up, that family is everything. I knew my parents would want me to bring my girls home.”


Sarah was determined to be reunited with her twins, but she needed to get help. She began seeing a psychologist. “I went through six psychologists before I found the right one, and this psychologist helped me tremendously,” she says.


Life was difficult at home without the girls, but Sarah says she knew they were in the right place until she got the help and support she needed.


After a year in foster care, the twins came in through Sarah’s front door – for good. “I finally felt strong enough, and had the support I needed to bring my girls home to where they belonged,” she says. Sarah says life at home with the twins felt “complete”.


Sarah believes things would have turned out very differently if she’d had different support at the hospital. “I look back and think that counsellor really should have said, ‘Hang on, you have severe depression, let’s get that sorted, then we can think about foster care’. But that’s not how it went, unfortunately.”


The twins have now been at home for seven years, and despite the bumpy start, Sarah says she now sees her girls as any other child, adding, “It’s really only when an appointment pops up for them that I think, ‘Oh, that’s right, my girls have a syndrome’. I wouldn’t be the person I am today if I didn’t go through that,” she says.


“There is definitely light at the end of the tunnel.”


*Name has been changed


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