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March 16, 2010

The Last Chance

Dr. Michael Belfort sums up his motivation to practice medicine with one sentence: “If I don’t do anything, they’ll die.”

He delivers this statement matter-of-factly, in a South African accent, as the late-afternoon sun streams into his office windows at St. Mark’s Hospital.

A close look at this lean, 51-year-old doctor shows you how the gravity of his calling weighs upon him.

His shirt is rumpled and his dense shock of salt-and-pepper hair is a mess after a day of absentmindedly running his hands through it while puzzling on medical problems.

In one hour he’ll be on a plane — an expectant mother’s last, best hope of seeing her children come into the world.

His skill as a surgeon takes him all around the country, bouncing through airports, the two sleek metal cases that contain the tools of his tradeby his side.

He’s a business traveler with the most serious business of all awaiting him wherever he lands.

Belfort and his partner, Dr. Robert Ball, are among a small number of specialists in the country who perform a surgery that can reverse a potentially fatal condition called Twin-Twin-Transfusion Syndrome (TTTS). TTTS occurs in identical twin pregnancies, which, as the result of increased use of fertility drugs and other assisted reproductive technologies, are on the rise. It is a frightening and dramatic condition that usually results in the death of one or both of the twins. In a case of TTTS, two babies share the same placenta but are each in separate amniotic sacs.

The placenta, which is essentially the infant’s heart, in that it controls the circulation of blood to the twins, links them in a transfusion. One twin is “donating” its blood to the other while the recipient twin becomes engorged with blood.

The surgery to correct this situation is not widely practiced. Most often, the expectant mothers are unable to travel to the select few hospitals that will perform it.

So Belfort and Ball created a system to go to them, a life-saving medical mission that can replace tragedy with a happy ending.

“We can take an almost hopeless situation and turn it into one where people actually have surviving children at the end of it,” Belfort says.

An Anxious Mother

For Shannon Gimbel, Belfort and Ball’s dedication was the last chance for her two unborn children.

Shannon was realistic about becoming a mother. She and her husband had a difficult time conceiving and underwent the roller coaster of emotions that advanced reproductive therapy brings.

“We needed a lot of people to help us get pregnant,” she says.

She had already lost a set of twins in an earlier pregnancy and had decided to try to avoid another twin pregnancy during her next attempt by only implanting a single embryo. “But it divided anyway,” she says.

“One of them wanted a sister.”

So now, pregnant again with twins, she was extra anxious about her chances of success.

“Because of what had happened before, I think my regular physician thought of me as the ‘boy who cried wolf,’” she says. “But I knew something was wrong. It was too early for me to be this miserable and uncomfortable, and my belly was too big. I felt like I was going to deliver them at any moment.

I insisted on seeing a specialist. I was exactly 17 weeks along, and they found that I was in TTTS.”

A Dire Situation

Shannon was one of only 4,000 pregnant women in the United States who experience TTTS each year. Belfort, who is also a maternal-fetal practitioner at St. Mark’s here in Salt Lake City, explains the gravity of the diagnosis.

“The smaller baby is struggling to survive,” Belfort explains. “It’s giving away so much of its blood, it shuts down its kidneys and all the organs it doesn’t need to conserve blood for the brain and heart.

"Thus, it stops urinating, and fetal urine is essentially the fluid the baby is surrounded by. But the fetus continues to swallow the fluid and eventually drinks it all. So the membrane or sac it’s in becomes vacuum-packed around it and pushes it into the side of the uterus. Meanwhile the other twin is getting too much blood. This baby tries to expel it out, and its sac becomes huge. So you have too much fluid and no fluid, and it’s a very dire situation for both children.”

The recipient baby is actually the one at greatest risk of dying first, Belfort says, most often as the result of heart failure.

Because of the open connections between the twins in TTTS, when one baby dies the other frequently pumps most of its blood into the low pressure system left behind in the dead baby, and that results in the second twin dying or suffering severe brain damage.
 

At the time Belfort and Ball first came in contact with Shannon, they were still working to build a program that would allow them to do the life-saving surgery all around the country, and Shannon was to be one of their first “fly and fixes.” Using the wide-ranging resources of the Hospital Corporation of America (St. Mark’s parent company), they designed the program to
address the specific concerns of TTTS. Because the condition of TTTS is so rare, and because often those who have it are unable to fly for medical, financial or other reasons, they decided they had to come up with a plan to go to them.

“A lot of people do not have access to these hospitals where they can do this surgery,” Belfort says. “Medicaid may pay for the surgery but won’t pay for travel, for example.

 Or the patient may be too unstable to travel, or may not want to travel away from family and support to stay in another city. With this condition, they might have to deliver very early, and to be in a city away from your family for weeks and weeks is hard. So for logistical as well as humanitarian reasons, we came up with the idea of going to the patient.”

The Last Chance
Before she met Belfort and Ball, Shannon flew to Seattle from her Denver home to be evaluated for the surgery. The doctors there, however, turned her down, believing the risks were too high. She returned to Denver with little hope remaining.

“One of my daughters, the recipient twin, was in heart failure,” she says. “Because I didn’t meet the exact criteria for surgery, they (the doctors in Seattle) wouldn’t do it. And without the surgery, the only options are to, for one, do nothing, which statistically means they’re both going to die. The other option was to go for what they call ‘selective reduction’ and terminate one of my children.”
Enter Belfort and Ball, at the right time in the development with their fledgling program.
 

“My specialist in Colorado had worked with Dr. Ball,” she says, “I called him and he said, ‘Let’s take a look.’ So they agreed to come out and evaluate me for the surgery. They told me that my girls deserved a chance.”
 

The surgery held no guarantee of success. But after it all—the fertility treatments, the loss of her first twins, the decision to try again, a second pregnancy and now this terrible complication—Shannon decided to opt for hope.

The surgery is not simple. Shannon watched the display screens above her swollen belly as Belfort inserted a small telescope, camera and laser fiber into her womb. With Ball guiding him on ultrasound, Belfort identified the offending blood vessels that were connecting her unborn children’s blood systems and used the laser to burn them closed.

“It’s critical to work as a team,” Belfort says. “In the heat of battle, we are bouncing ideas off each other and talking constantly. It’s absolutely crucial to have two minds looking at the problem at the same time.”
Shannon knew the odds—an 80- to 85-percent chance of survival for at least one twin, and a 65- to 70-percent chance of both the babies living. But she pushed those thoughts away.

“There are so many things that can go wrong, I was just numb and scared. After the surgery, they wait 10 hours and then check to see if there are heartbeats. You just hold your breath. I couldn’t look past each day, I wondered if that day was going to be the day I lost my babies. I’d just try to get through one more day.”

The twins’ hearts were beating.

Up until that point she had been dispassionately referring to them as “Baby A” and “Baby B,” but now she named her two daughters, Reese and McKenna.

Reese had been the recipient twin, and had developed some heart problems. Since her birth, she has had two surgeries to repair the damage, Shannon says, but the prognosis is good.

“They’re healthy and making me crazy,” Shannon says. “So they must be normal 2-year-olds, right? I know this is something Dr. Belfort and Dr. Ball do every day, but they made my family. They gave me the chance to be a mom. How do you thank someone for that? I wanted a chance, but until they came into the picture, nobody would give us that chance.”

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