Diagnosed During Pregnancy, This Mom Shares Her Story: 'I Knew We Could Lose Both Babies'
With just hours to go before undergoing surgery to save her unborn twin sons, Gina Acevedo turned to her husband, Alex, and tearfully told him she wanted to name their boys. "If my boys were going to pass away, I wanted each of them to have a name, just like any other baby,” she says.
As a hospital receptionist, Gina can confidently reel off details and statistics about any number of complex medical procedures. But when she talks about that moment, her voice catches as she composes herself. Gina knew there was a 40 percent chance the babies wouldn't make it—the mom-to-be had been just 19 weeks along in an uneventful pregnancy when she learned that her boys suffered from Twin-to-Twin Transfusion Syndrome (TTTS), a condition that occurs in approximately 10 to 15 percent of identical twins. Still, the risk didn't really hit her until the surgery was imminent. Left untreated, TTTS has an almost 100 percent mortality rate.
Gina and Alex agreed on two favorite names: The smaller twin, previously known as Baby B, was now Joaquin Niguel. His brother, Baby A, was Benicio David. The babies middle names honored Gina’s dad, David, and Alex’s brother Niguel, both of whom traveled to Minneapolis to be at the hospital with Gina and Alex.
COMING TO GRIPS WITH TTTS
In healthy pregnancies, identical twins, who share a placenta, also share blood vessel connections inside that placenta, which flow back and forth evenly between each baby. But with TTTS, those connections become imbalanced and too many flow toward one baby, causing an unequal distribution of blood. Benicio was receiving too much, which was swelling his amniotic sac and putting him at risk of heart failure. Joaquin, on the other hand, wasn’t getting enough. He was severely dehydrated and wasn’t growing at a healthy rate.
The best hope for the twins was a relatively new procedure, called fetoscopic laser ablation surgery, which separates the blood vessels so that each twin has his own independent blood circulation. It’s considered the best chance for babies with TTTS, with 76 percent of surgeries keeping at least one baby alive. The challenge is that the procedure is performed in fewer than 20 hospitals in the country. To make matters even more difficult, it should be performed within 24 hours of an advanced TTTS diagnosis.
The Acevedos were fortunate—Children’s Minnesota in Minneapolis, which has an established program treating TTTS with laser ablation, is a 70 mile drive from their home in St. Cloud, Minnesota.
However, the hopeful parents-to-be had no idea the level of crisis they faced. Besides the normal risks associated with having twins, Gina, who was 29 and in good health, had nothing to be concerned about when she went in for her 18 week appointment with the perinatologist. When an ultrasound showed that the fluid in the boys’ amniotic sacs was unequal, the doctor mentioned that this could be a sign of TTTS, and asked her to come back two days later for another ultrasound.
While Gina was scared, she didn’t know that from the moment the doctors mentioned they were monitoring the twins for TTTS, her husband, Alex, was in an even deeper panic, having googled information that terrified him. He’d read about parents coming home to empty cribs and browsed online support groups for people coping with their grief. “I was trying to stay strong for Gina and to have positive thoughts,” he says. “But I was really scared and paranoid. I knew if it was TTTS, we could lose both babies.”
For almost two weeks, Gina and Alex returned several times for follow-up ultrasounds. “We were in a very fragile state emotionally,” says Gina. “I was afraid to put the cribs together because I was terrified of coming home after having lost one or both boys and seeing an empty crib." Then, when the babies were 19 weeks and three days, the scan showed troubling results. “I could see that one sac was really full and that the other was almost empty,” remembers Gina. It was time to head to Minneapolis for surgery.
Once Gina and Alex checked into the Midwest Fetal Care Center at Children’s Minnesota, they were swooped up in a whirl of scans, tests, and meetings. None of their doctors tried to sugarcoat the situation: “It’s such a horrible disease,” says Brad Feltis, M.D., Ph.D., the doctor who performed the surgery. “Even with the most complicated fetal surgeries we are never talking about a situation where almost 40 percent of the babies die. But that’s the reality of this disease.”
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CRISIS ON SURGERY DAY
Gina was awake for the minimally-invasive surgery and was able to see what was happening on a monitor in the operating room. “At one point I clearly saw a foot,” she remembers. “All I could think was that it was the cutest foot I’d ever seen.”
The surgical team worked to separate the twins’ blood circulation, so it was like that of fraternal twins. Then, after about an hour in surgery, they were well into the home stretch, with just one the last blood vessel to laser. That’s when Gina saw what looked like a faucet of blood rushing across the screen. The blood vessel had exploded.
Dr. Feltis knew he had up to ten seconds before the blood would make it impossible to see what he was doing, so his team began improvising to stop the bleeding, doing whatever they needed to do to save the babies. Eventually, they stopped the bleeding by pressing a fetascope against the rupture and holding it in place for around 20 minutes. “We weren’t sure we’d gotten all the blood vessels, but there was nothing more we could do,” says Feltis. “That’s the hand we had.”
Staring at the now clouded screen, Gina began shaking so uncontrollably that she panicked she was hurting the babies. Fetal interventionist David Lynch-Salamon, M.D., calmly explained that even though they weren’t able to laser every blood vessel, they needed to stop the surgery. They’d do an ultrasound in a few hours to see how the boys were faring. It was a waiting game now to see if the surgery was a success or not. Everyone, including the medical team, was on edge.
In her hospital room, Gina closed her eyes when Dr. Lynch-Salamon slid the ultrasound wand over her belly. It had been only a few hours after the surgery. If her babies were dead, she didn’t want to see their lifeless bodies on the screen.
But when she heard Dr. Lynch-Salamon say “Two heartbeats,” the tears came fast. By the time he announced he could see two bladders, the entire room was crying.
Gina opened her eyes. There were blood clots floating all around her boys, but she could see that their fluid levels were even. She could see they were both alive.
A SCARY WAITING GAME
Gina and Alex returned home to St. Cloud, where Gina was put on bed rest for two weeks before transitioning to a modified rest plan, where she was able to return to work as long as she remained seated at her desk. Time seemed to move backwards. “Every night I went to bed afraid that when I woke up the next morning I wouldn’t be able to feel the boys moving around in my belly,” says Gina. “I feared for them every single day.” Their doctors set them on a schedule of two ultrasounds a week.
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Both Dr. Feltis and Dr. Lynch-Salamon received regular reports from St. Cloud. When he was given the details of the 26-week ultrasound, Dr. Feltis smiled and thought man, these kids are going to make it. But for Gina and Alex, there were still more hairpin turns in their road to becoming parents. Gina’s water broke at the 31 week mark and she was admitted to the hospital, placed on full-time bedrest, and given steroids to help the baby’s lungs develop. Three days later, the boys were delivered via an emergency C-section.
Looking back on those harrowing days, Gina and Alex say it’s sometimes hard to process that they made it through such an ordeal. Now 2 ½-years-old, Benicio and Joaquin are healthy and don’t show any signs of developmental delays that can be common in children who are born prematurely.
Last summer, Gina took the boys to play at a St. Cloud park, only to realize it was the park she used to look at from her hospital window in the final days of her pregnancy. “I saw my sons running and playing, laughing and having a good time as I spotted the hospital across the river, Gina remembers. “And I thought wow, look at these two boys enjoying life. It was a defining moment for me. We had made it to the other side.”