Facing the unknown in awaiting the birth of rare twins

MARK HUME

VANCOUVER From The Globe and Mail, Oct. 9, 2006

As two nurses spread their hands over her swollen belly, searching for the heartbeats of rare twins within, Felicia Simms leans her head back against the wall and waits.

The external microphones being slid over her skin by Cordelia Merritt and Cathy West, members of the Antepartum Home Care team at BC Women's Hospital & Health Centre, are probing for a sound few people ever hear: the reverberations of two separate but linked hearts.

When it comes, insistent and urgent, it will charge the room with emotion.

The identical twins that Ms. Simms has now been carrying for 31 weeks are conjoined, which occurs only once in every 100,000 births.

The twins -- already named Krista and Tatiana, after fairies -- are joined at the head where skin, bone and possibly the brain are connected. They exist in this way because the embryo didn't separate completely when it split to form identical twins on about the 13th day after conception. The two embryos have since developed into two healthy, but partially fused, fetuses.

On Oct. 26 at BC Women's Hospital, which handles 7,000 births a year, a special team of doctors is scheduled to deliver the babies by cesarean section. Douglas Cochrane, a pediatric surgeon on the team assessing Ms. Simms, told The Canadian Press recently that a group of leading experts would be put together to handle the case.

"And if that takes us to the far corners of the world, so be it," he said.

At some future date, if both babies survive, a decision will be made as to whether or not to surgically separate them.

Among high-risk pregnancies, few can be more extreme than conjoined twins. About 40 per cent of conjoined twins are stillborn, and 75 per cent are either stillborn or do not survive more than 24 hours.

But those daunting odds don't appear to be weighing heavily on Ms. Simms, a 21-year-old mother of two, with long, dark hair and a serene countenance, who is at peace with the form her babies have taken, and who says she thinks everything is going to be alright.

I feel confident," she said just before her first of two daily checks by nurses to see whether the twins were healthy.

"It's scary and you worry a lot, but I know that they are going to make it."

As Ms. Merritt gently traced the outline of one baby, Ms. West found the other and glanced over at the electronic fetal monitoring machine recording the heartbeats in two continuous parallel lines. A loud squelching sound came from the speakers whenever one of the babies moved.

Fading in and out, as the microphone lost contact, was a single, faint heartbeat.

"Mothers need to be patient for this test," Ms. Merritt said calmly. "We're only listening to one heartbeat at a time. . . . There we go. We've got two of them."

From the speakers on the electronic fetal monitor came the pattering of two tiny hearts, racing like the hoof beats of galloping horses.

Ms. Simms smiled slightly and closed her eyes.

What's it like to hear those two hearts beating?

"Calming," she answered. "Actually it makes me want to go to sleep."

As the fetal monitor recorded the track lines of the twin hearts, the nurses seemed satisfied that both babies were healthy. For now.

"It's sort of like taking a picture," Ms. Merritt said. "It doesn't predict what's going to happen in the future."

Standing nearby, Louise McKay, who is Ms. Simms's mother, and Rhea McKay, her younger sister, embraced and let out a sigh.

"It makes me teary-eyed," Rhea said of the heartbeats. "Makes me want to cry whenever I hear it." A tear ran down Rhea's cheek and her mother brushed it away.

Outwardly, Ms. Simms and her family seem calm. But when her mother, Ms. McKay, was told that, she laughed.

"On the outside!" she said, before describing the inner turmoil she has experienced since learning her daughter was carrying conjoined twins.

"It's been an emotional roller coaster. I'm one day feeling okay and the next day I'm feeling anxious and panicky and you know, wondering what's going to happen. It's hard to say. . . . I just try to push it to the back of my mind. You know, you've got to do what you've got to do. . . . Will they make it? That's the big one. Other than that nothing [is important], because it doesn't matter to me about them being born [conjoined]. We're all going to love them just as if they were separate."

Ms. Simms, who lives on income assistance in Vernon surrounded by a large and supportive extended family, has already had two normal pregnancies. She has a three-year-old daughter, Rosa Hogan, and a two-year-old son, Christopher McKay, with her partner, Brenden Hogan.

She was shocked when her family doctor told her the twins she was carrying were conjoined.

But she said she never considered terminating the pregnancy. "I don't think I could ever kill a child, whether it's unborn or born. It's a living thing and it deserves a chance too," she said in an earlier interview.

As the weeks of her pregnancy advanced and the big date has drawn near, Ms. Simms and her family have fallen in love with the babies, whom they have seen through ultrasound imaging and whose heartbeats they listen to daily.

In an interview in the two small, adjoining rooms they share near BC Women's Hospital, Ms. Simms and her mother said they were taking things one day at a time. But they were also looking ahead to what happens after the births of Krista and Tatiana.

"It's the breastfeeding part that I'm trying to [imagine]," Ms. Simms said.

Ms. McKay added: "We're all sitting here thinking, 'Okay, babies have to have a chair to go home in. Like a car seat.' That's going to be a challenge trying to figure out who and where we are going to get one from. . . . They have separate chairs. But these ones aren't going to have separate chairs for a while, if at all, and you know, we've got to start thinking about stuff like that.

"We need to know if one child is smaller than the other. How exactly they're turned so that the chairs are made so that they're comfortable and stuff like that. It just hits you, it's like, 'Oh, how are we getting these guys home?' " she said, sounding like any grandmother, fretting over details.

Ms. Simms said she has been worrying about how things will go at the C-section. After two natural births she's anxious about being cut open.

Mostly, however, she's excited about getting to hold her babies.

"I can't wait to see them and say 'Hi!' instead of having to talk through my belly. I can actually look at them and tell them I love them."

Twice a day she is visited by nurses for fetal heart monitoring. Ultrasound images and other tests are done routinely.

One magnetic resonance imaging session indicated the twins had separate brain stems, which was good news. But a later MRI showed the point of joining was complex.

"Right where they are joined, they think the brain back there is connected. They're not sure what they're going to do," Ms. Simms said.

Both she and her mother were shaken recently when they learned the twins had done a headstand overnight, in the process tangling their umbilical cords, a complication that could reduce or cut off blood supply to the fetuses. About 50 per cent of twins sharing the same amnion, the membrane surrounding the fetus, die from umbilical-cord entanglement.

"Felicia had a bad day that day," Ms. McKay said. "You know, we've gone this far and to have something like that happen. Does this mean they are not going to make it? You know, little things start racing through your mind. Doubts.

"I was upset. Scared for Felicia. But you have to go on. And she's so strong and . . . you know it feels like the babies are going to make it, so that's what I'm going with," she said, taking a deep breath.

"God gives you these challenges, I guess you would say, and you cope with them, you do your best."

Ms. McKay, who goes for walks in the mall with Ms. Simms to pass time, said she has more up days than down days, but sometimes feels overwhelmed.

When the pressure gets to be too much, she closes the door that separates the two small bedrooms that seven members of her family are sharing, sits on one of the twin beds covered with pink blankets, looks at the blank walls painted hospital green and weeps for Felicia.

"I am the emotional one. I have to come in here and cry my eyes out. I just hate seeing my kid go through this," she said quietly while her daughter was out of the room being tested.

When Ms. Simms returned, walking with the slow grace of a heavily pregnant woman, Ms. McKay embraced her gently.

Ms. Simms lay on the bed with her hands cupped under her belly. Krista, she said, was moving. But Tatiana was asleep.

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