Pregnancies from hell: Twin-to-Twin Transfusion Syndrome

Twins. Twins?!

Jenna Morton remembers her shock at this unexpected reveal during a routine ultrasound. With a healthy one-year-old daughter, Clara, and no history of multiples in their families, Jenna and her husband, Alex, had decided to forgo any early ultrasounds, so she was already 19 weeks pregnant when they discovered there were two buns in the oven.

“I was showing much earlier than I did with my daughter, and a couple of people mentioned I’d popped early, but I just laughed it off,” she says. “It was a happy shock. We digested the news over lunch and then called all of our family. I remember we were very excited to share the news on Facebook that night.”

But the jubilance was short-lived for the Boundary Creek, NB, couple. The next morning, a Tuesday, Jenna got a call that she needed to come into the maternal fetal unit that afternoon. She thought it must be routine for a multiples pregnancy. It wasn’t.

During the ultrasound, red flags quickly popped up as she and Alex overheard the doctors discussing the pregnancy with unfamiliar words and grave expressions. Their babies—both boys—had developed Twin-to-Twin Transfusion Syndrome (TTTS), which means that abnormal blood vessels in the shared placenta had caused their umbilical cords to fuse together. One baby was getting an overabundance of nutrients, which could lead to strain on his heart; the other was being deprived of what he needed to grow, and was at risk for decreased blood flow and bladder activity. If nothing was done, the larger baby was given a 60 percent chance of survival, and the smaller one, just 10 percent.

“Those words echo in my head to this day,” Jenna says. “People say the air rushes out of you, and that’s exactly what it was like—I couldn’t breathe. I remember tears streaming down my face. The only thing to hold onto was that they weren’t saying zero chance."

The couple were given options, but they needed to decide quickly. They could terminate the pregnancy. They could eliminate one baby from the womb to help the other. They could do nothing and wait to see if one of the babies died in utero. Or they could have fetoscopic laser ablation surgery to attempt to separate the shared vessels, which is only available up to a certain stage of severity of TTTS—the one they were at—and would need to be done immediately at Mount Sinai in Toronto.

It wasn’t a hard decision. “There were risks to the surgery, but I just needed to hear them say, ‘This is your best shot’ to know we had to try,” says Jenna. They leapt into prep mode to fly out Wednesday morning, since the babies’ health was deteriorating rapidly.

“Our heads were spinning. I think we were in shock—adrenalin and tunnel vision had us focusing on what needed to be done. All I could think of was, I need to hold my daughter. I need to hold the one that’s alive right now.”

Clara stayed with Alex’s parents as the couple flew to Toronto and checked into Mount Sinai. Between Moncton and Toronto, the smaller baby’s bladder function had dropped off significantly—one of the signs they were entering the final stages of TTTS, and the opportunity to do anything to help was quickly evaporating.

Before the surgery, they named the boys—Rory and Alasdair. “After spending hours watching them on the ultrasound screen, talking about Baby A and Baby B, and knowing we might not ever meet them alive...if something happened, I wanted it to happen to my sons, who had names.”

Jenna was in the operating room by Thursday morning and remembers feeling grateful for the anesthetic that mellowed her out so she was able to watch the laser surgery separating the umbilical cord in 17 places, and see her 20-week-old sons through a camera inside her uterus. “We were very close to losing the boys by the time we went into surgery,” she says. “I couldn’t think of what-ifs.I thought ‘This has to work.’”

It did. Her smaller son, Rory, showed great improvement by Friday morning. Alasdair also came out of the surgery healthier. The doctors were cautiously optimistic, reminding the Mortons that there was still a long road ahead, since other health issues like heart problems can develop and sometimes TTTS can reoccur. They weren’t out of the woods, but their odds were much better.

By Saturday—less than a week after first finding out they were pregnant with twins—Jenna and Alex were back home with Clara. Jenna was put on modified bedrest, with regular ultrasounds to keep a close eye on the babies’ progress. “We put ourselves in a bit of a bubble, just focusing on the next step, the next goal. We knew that if anything happened in the next month, things could get dicey. So we set our sights on getting to 24 weeks, then 26 weeks, says Jenna. “We didn’t want to freak ourselves out about all the things that could happen, but at the same time, we didn’t go out and buy two of everything. There was discussion around having a baby shower—and then about not having a baby shower in case they weren’t born alive. It was all just too much to process.”

Alasdair and Rory progressed steadily until about week 30, when doctors became concerned about Rory’s development. The boys arrived at 32 weeks via C-section.

They came out crying. “It was the best moment ever,” says Jenna. “They were so tiny, but they breathed in the air and didn’t need oxygen support and cried like newborn babies should. It meant so many things were working. We both got to hold them. It was the best-case scenario.”

The boys are now energetic two-year-olds, with no significant delays from their rocky start.

“If I had booked my ultrasound for the Wednesday instead of Monday, I doubt they’d both be here,” says Jenna. “Sometimes I’ll catch myself watching Rory doing something and I’ll hear that ‘10 percent chance of living’ in my head and be reminded of how incredibly lucky we are.”

A version of this article appeared in the May 2015 issue with the headline "Pregnancies from hell," pp. 84-88

Want to read about more pregnancies from hell? Pregnancies from hell: hypertension, hydramnios and more  Pregnancies from hell: an incompetent cervix