Mum's selfie-scan saves son's life from twin-to-twin transfusion syndrome

Dr Ilse Dirkzwager with "perfect and healthy" twin sons Quinn and Nico Woods. Photo / Greg Bowker

Pregnant radiologist picks up rare disease in time for laser surgery which has cut death rates for twin babies.

Dr Ilse Dirkzwager specialises in doing scans, so when her identical-twin pregnancy felt wrong, she did a selfie ultrasound on her own belly.

It was 21 weeks into the pregnancy when she noticed one twin had stopped moving and she felt distended.

"I was alert to the potential symptoms," says Dr Dirkzwager, a radiologist.

The self-scan confirmed her fear that her babies were suffering an often-fatal condition in which abnormal blood vessel connections on the shared placenta cause one twin continuously to lose blood to the other.

"I saw that one of the twins was stuck to the side wall [of the uterus] and didn't have any fluid around him. He wasn't moving and he didn't have any urine in his bladder. I knew that it was severe twin-to-twin transfusion syndrome.

"I knew we were in dire straits. I was extremely distressed about it, but I had to keep my emotions under control and do what I could do."

It was early evening. She rang her partner Reuben Woods and her obstetrician.

"I was in tears when I was driving home. I felt so overwhelmed, I just knew how bad the situation was."

The next day she had a formal ultrasound which confirmed the self-diagnosis, then fetal laser surgery, an extremely delicate operation to find and block the abnormal blood vessel connections.

Through a small incision in the abdomen and another in the uterus the specialist inserts a 3mm-diameter telescope and through that a laser fibre to cauterise the faulty blood vessels.

The excess fluid in the sac around the fetus receiving too much blood - the cause of Dr Dirkzwager's distended belly and a key sign of the syndrome - is drained off.

Dr Dirkzwager says she worried throughout the rest of the pregnancy that the condition would recur.

She searched for things she could do to reduce the risk and found herself, despite the lack of scientific evidence, boosting her protein intake, even getting up in the night to chomp a protein bar.

The twins, Nico and Quinn, now aged 16 months, were born by caesarean at 36 weeks gestation.

Nico, the twin who was losing blood, spent his first 21 days following birth in neonatal intensive care because of breathing difficulties but recovered.

"Donor" twins are often smaller than their sibling as their growth has been restricted by a shortage of nutrients; Nico has escaped this.

"We were very fortunate to have an absolutely fantastic result from the laser surgery," says their mother.

"The boys have come out of it absolutely perfect and healthy; we couldn't have hoped for a better result."

The survival rate of babies afflicted with the rare disease is rising, thanks to the high-tech treatment offered to New Zealand women only at Auckland City Hospital, in a service that began in 2009.

Results of its first five years were discussed at the World of Women's Health conference in Wellington this week.

The survival rate improved from 42 per cent in the first part of the audit to 64 per cent towards the end. Survival of at least one twin increased slightly, to 79 per cent of pregnancies.