Pregnancy complications:  Rachel and Shaun

Finding out the sex of an unborn child is one of the most exciting times for expectant parents, but for Rachel and Shaun, their baby’s scan sent them on an emotional roller-coaster through the miracle of life, a medical first, and the shadow of death.

The scan revealed so much more than the sex of the baby girl growing within Rachel - it exposed a problem that had specialists urging Rachel and Shaun to terminate the pregnancy. Baby Bella was not alone in the womb – nestled beside her was a twin with no heart.

“Everything was going perfectly normally, so we thought,” explains Rachel. “The only thing was I was bigger than normal, but we put that down to it being my second pregnancy. At 19 weeks we went to find out what we were having. I was pretty sure we were having a girl, but it was exciting all the same. We took our older child Jack along to get his first glimpse ... and then they said, ‘Did you know there are two?’.” The stunned parents gaped at each other as they absorbed the news.

Within two minutes though, the radiographer said, “Something’s not right”, and during the hour-and-a half scan Shaun and Rachel realised that their two babies had only one heart beat between them.

“It sounds awful, but we were okay with that because we went in expecting one baby, we just wanted to know what was going on and what we had to do.”  They didn’t click that Bella was in danger until a specialist told them to consider terminating the pregnancy, warning she could be severely brain damaged or die.

Their nightmare was caused by “twin reversed arterial perfusion” or TRAP, which affects about one in 35,000 births and caused Bella’s twin, named Rose, to lack a heart – putting huge strain on Bella as she pumped blood for both of them.

Rachel and Shaun went home, shed a few tears then hit the internet, arming themselves with information for their coming ordeal. After reading about a risky foetal surgery commonly performed overseas but never done in New Zealand before, Rachel and Shaun rejected advice to “wait and see”, and asked for surgery to sever Rose’s umbilical cord and save Bella.

The surgery was available to New Zealanders willing to travel to Brisbane, but a week after Rachel’s devastating scan, Auckland University head of maternal foetal medicine, Professor Peter Stone, agreed to operate at National Woman’s the following week.   The operation was a success and, as planned, Rachel’s pregnancy continued with Rose still inside: removing her would have disrupted the entire pregnancy.

Then, at 23 weeks Rachel’s waters suddenly broke. Says Rachel: “The surgery had weakened the membrane that the babies were held in. I sat in National Women’s until I had her at 31 weeks - I lasted eight weeks with my waters broken!”

Baby Bella was born a healthy and beautiful 1.9kg, while her twin had shrunk to a tiny 75 grams - but Rachel and Shaun had long since put the twin’s presence to the back of their minds. Shaun explains, “Our philosophy was to forget about the other twin. We had to treat it like a normal pregnancy even though it wasn’t. We focused on making sure Bella was okay and pushed everything else to the back.”

“Every now and then though,” admits Rachel, “I still have days when I see her smiling and think, ‘Oh my God, there would have been two of you’, which would have been lovely.”

Rachel and Shaun hope that further research into conditions such as TRAP and twin-to-twin transfusion syndrome (TTTS) will help to save the lives of more babies like Bella in the future.