Twin sisters survive lethal bond, laser surgery in the womb

January 5, 2017  //  FOUND IN: News,

Before they were even born, twin sisters Zonabelle and Patricia Moore shared a physical bond so strong it almost killed them.

Today, a year after a highly specialized fetal procedure at U-M’s Von Voigtlander Women’s Hospital saved their lives, the toddlers are on to sharing better things: the same hue of bright blue eyes, a distinct baby babble only they understand and a love for Mickey Mouse Clubhouse.

And last month, they celebrated a major milestone — the holidays at home.

‘Bracing for the worst’

Scott and Jennifer Moore, of Saginaw, had been hoping to give their son, Alexander, a sibling for some time. They were thrilled when Jennifer learned she was pregnant in May 2015.

Then the ultrasound revealed their family would be growing more than they thought.

“The doctor told us, ‘There’s another one in there.’ Surprise. Twins,” Jennifer said. “We were blown away.”

But during the second trimester of pregnancy, the expectant parents learned heartbreaking news. The baby girls were in two separate sacs but shared one placenta. Instead of getting equal amounts of blood and nutrition, one had become a blood donor to the other.

This rare condition, known as twin-to-twin transfusion syndrome, meant one of the babies was receiving too much blood, making extra urine and therefore swimming in an ocean of fluid. Her organs were strained, causing her heart to work overtime and eventually fail. She did not have much time to live.

Meanwhile, the other baby had given away so much blood that her kidneys stopped working and making urine. Without amniotic fluid around her, she was compressed in her sac as if shrink-wrapped inside the womb.

Doctors don’t know why this condition affects 10 to 15 percent of shared placenta pregnancies. Without intervention, the babies had more than a 90 percent chance of dying.

The Moores were referred to U-M for help. Jennifer was immediately seen at the Michigan Fetal Diagnosis and Treatment Center, the only center for in utero fetal therapy in Michigan and surrounding states and among roughly 20 in the country. The fetal therapy team is qualified to use highly specialized laser ablation to destroy erroneous blood connections in the shared placenta in twin-twin transfusion cases.

“In the best-case scenario, we would save both of our girls. But there was also a chance we could lose both,” Jennifer said.

“As far as we knew, they had been doing perfectly up until then, so to suddenly hear that your babies might die … it was like getting our hearts ripped out.”

The case was dire. As the twin receiving too much blood, Zonabelle’s tiny heart was already failing.

“We were bracing for the worst but had to hold on to hope because we had no other choice,” Jennifer said. “We had complete trust in our Michigan doctors and couldn’t have asked for a better team. We felt safe and knew this was our best option to save our daughters.”

Just days after the diagnosis in September 2015, a team led by U-M maternal-fetal medicine specialist Deborah Berman, M.D., inserted an instrument the size of a pinky nail into Jennifer’s abdomen, through her uterus, and into Zonabelle’s amniotic sac. The tiny incision let in a camera allowing Berman to map out the improper blood connections.

Then, using laser therapy with the same instrument, Berman disconnected the more than 30 blood vessels causing the mixed up wiring. She then removed the extra amniotic fluid engulfing Zonabelle.

“I always tell people it’s a teeny incision with a huge job,” said Berman, who is also the head of the U-M Complicated Monochorionic and Twin-to-Twin Transfusion Program. “In this case, both of the babies were incredibly sick and the condition was in its most progressive stage, Stage 4. We had very little time to intervene.”

Then came the agonizing wait. Such a massive, abrupt disruption can be too much for some babies to tolerate, and Zonabelle, now nicknamed Zoey, was especially fragile.

“I was patting my belly telling them, ‘You can do it,’” Jennifer said.

“It was very emotional,” said Scott. “You just think about all of those life moments … life moments you could miss.”

The next day, Berman did the highly-anticipated ultrasound. Both babies survived. Fluid had returned to Patricia’s amniotic sac, her kidneys and bladder again showing up on the images. Zoey’s heartbeat was starting to bounce back.

“In 24 hours, they made such an amazing turnaround,” Jennifer said. “It still leaves me speechless.”

After the procedure

Zoey and Patricia, now known as Tricia, were born premature at 26 weeks, which happens in about 30 percent of twin-to-twin transfusion cases involving laser therapy intervention.

The identical twins each spent roughly 90 days in the hospital, much of it in the neonatal intensive care unit at U-M’s C.S. Mott Children’s Hospital and some back at their local hospital in Saginaw, where they spent Christmas 2015.

They finally came home in late January 2016 but continued to need oxygen support until June.

By their first birthday in October, “no one could even tell” the girls had traveled such a treacherous path, Jennifer said.

Today, the toddlers hold hands when they eat, enjoy pears and banana biscuits, and adore Alexander, who is often spotted showing them his games and kissing their foreheads to comfort them.

This Christmas, the family celebrated as a complete unit.

“We didn’t think we’d ever have a normal life. We thought it was over,” Jennifer said. “Someday, we will tell them their story. How hard they fought to be here. How lucky we were to have the phenomenal team at Michigan devoted to saving their lives.

“We were so close to never meeting them. Every single day will be special to us.”

For more stories like this one, check out the Michigan Health Blog.