Twin-to-twin transfusion syndrome (TTTS): one mum's story

Tricky start ... Kasey-Rae Chambers with her twin daughters Hallie (left), and Harlow.
Tricky start ... Kasey-Rae Chambers with her twin daughters Hallie (left), and Harlow. Photo: Brett Wortman

The day Kasey-Rae Chambers found out she was having twins, she was ecstatic.

A healthy 22-year-old, her pregnancy went like clockwork until her routine 16-week scan in March last year.

"We went in there all happy and excited," Kasey-Rae, of Little Mountain, said. "It was my partner Aiden's birthday and we were going to find out the sex of our babies.

"But they said they couldn't tell us at that time as we had 'something else' going on."

The sonographer told the couple that Kasey-Rae's babies seemed to have twin-to-twin transfusion syndrome (TTTS).

TTTS is a disease of the placenta that affects 15-20 per cent of identical twins. In simple terms, the twins are conjoined at the placenta, which contains abnormal blood vessels that pass to the twins. It can mean that one baby - the recipient twin - gets an overload of the nutrients, leaving the other - the donor twin - without the vital nutrients it needs to survive.

Without intervention, the condition is fatal to twins diagnosed before 22 weeks gestation.

Kasey-Rae's pregnancy was at stage three: a small amount of amniotic fluid was around one twin, later named Hallelujah ('Hallie'), and a larger amount around the other twin, Harlow.

"I just broke down," she said.

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"I was a complete and utter mess."

At stage three, an abnormal blood flow occurs in the umbilical cords of the twins. If possible, fetalscopic laser surgery - where the vessels that connect the twins are severed - is usually carried out.

After the ultrasound, the couple had to wait out an agonising weekend before their specialist appointment at the Royal Brisbane Hospital. The laser surgery took place two days later.

"I was awake for the procedure," Kasey-Rae said.

"It was surreal ... because at 16 weeks, they were only 120 grams, but they were fully-formed babies - fingers, toes, ears, everything.

"My donor baby, Hallie, wasn't moving and looked like she was shrink-wrapped in her membrane, it was so tight around her.

"She was in a foetal position and like a stillborn baby. Harlow was swimming in her amniotic fluid."

The first 24 hours after the surgery is the most critical; should one or more babies die, the mother would have to deliver stillborns.

But luckily, both Kasey-Rae's twin girls survived.

Close monitoring followed, but that also had complications.

"I had experienced premature rupture of the membranes due to surgery," Kasey-Rae said.

"Also, one twin had become severely anemic and the other polycythemic (a high concentration of red blood cells in the blood).

"No intervention could be made to help my girls, and by 25 weeks, I had become 1.52cm dilated. With strict bed rest and close monitoring, I made it to 28 weeks."

When Hallie and Harlow were born at 28 weeks, they were the size of 24-week old premature babies. Hallie was very sick and needed several blood transfusions, while Harlow faced blood clotting and loss of limbs due to an excess of red blood cells. They were both in intensive care for two months, but were eventually able to come home three weeks before their actual due date.

Kasey-Rae said she never doubted her girls would live.

"In my perception, they were always fighters.

"Waiting for surgery, I sat there paging through a baby name book. Afterwards, my surgeon said he couldn't believe I did that.

"I told him, 'Either way, I was going to name them ... and I have faith in you, and in God'."

Kasey-Rae revealed that she herself was a twin but her sister had died at about 20 weeks gestation.

"(My mother) knew she was having twins but found out later in pregnancy that one had passed," she said.

"We don't know for sure if it was TTTS as more research has only come to light about it in the past 20 years."

Despite this, TTTS is not considered hereditary, genetic or caused by anything the parents did or did not do. It can happen to anyone at any point of an identical twin pregnancy.

Today, Hallie and Harlow are robust little girls just shy of nine months, and they are completely healthy and complication-free.

Celebrating their first birthday in June will no doubt be a proud day for their mother, whose determination and belief in her daughters is nothing short of awe-inspiring.

- Sunshine Coast Daily