State regulations prohibit Trident Health from treating babies as small as Jayden Segura, even though the hospital wants to upgrade its nursery to accommodate some of the region's most pre-mature infants.
Trident was obligated to send Jayden to MUSC after she was born because MUSC is one of five hospitals in the state designated to treat the gravest cases. The state limits the number of hospitals allowed to accept these infants because experts believe the policy concentrates expertise and improves outcomes.
Because Trident Health is located within 60 miles of MUSC, the S.C. Department of Health and Environmental Control denied a request earlier this year to upgrade its nursery in North Charleston.
Some doctors and hospital administrators argue those regulations need to change.
"The fact that (Trident) handled this baby so well is testament to the fact that they know what they're doing and they can handle the high-risk babies," said Dr. Jim Martin, the obstetrician who delivered Jayden.
A working group organized by the South Carolina Hospital Association recently recommended changes to the regulations that govern which hospitals are allowed to treat very low-birthweight babies. The DHEC board will consider the proposals later this year. Any changes to the regulations would ultimately require approval by the General Assembly.
Round O - When Jayden Segura was born at Trident Medical Center on Oct. 17, four months before her official due date, she weighed 14 ounces - barely more than a can of Coca-Cola.
Her whole body fit into a Ziploc bag. Her tiny hand covered only her father's thumbnail.
Jayden couldn't breathe or drink milk on her own. She needed heart surgery and almost died twice during those first few weeks.
"Every day was really, really difficult," her mother said. "She had a lot of bad days. They could not explain how she made it."
Doctors believe Jayden is one of the smallest babies ever born in South Carolina that has survived.
"I think it's very, very remarkable," said Dr. Jim Martin, the obstetrician who delivered her.
The way her parents tell it, Jayden's fate was a lucky alignment of advanced maternal-fetal medicine, the power of prayer and good fortune - but this is only half the story.
Jayden has a fraternal twin, although they don't share the same birthday - not even close. Jordyn Segura was delivered five weeks later on Nov. 22 at Medical University Hospital. She weighed less than 2 1/2 pounds when she was born.
"Taking care of the girls today I can't help but think back about how tiny and fragile they were," their dad, Matt Segura, wrote on the twins' Facebook page last month. "Every time I look at them I thank God for answering our prayers."
'This is very serious'
In mid-October, during a trip to Gatlinburg, Tenn., for their 15th wedding anniversary, Amanda Segura said she started feeling like "something just wasn't right."
The 34-year-old was about 21 weeks pregnant then - a little more than halfway through the regular 40-week gestation period. After adopting two children and struggling to conceive a baby of their own for years, a successful round of in vitro fertilization answered Matt and Amanda's prayers. The couple expected to deliver twins in February, although everything changed after their mountain weekend.
"When I came home, I called the doctor to ask and they said it seemed normal to them, but it just didn't seem normal to me," she said. "So the next day I asked if they could just see me to make sure."
During that appointment, Martin discovered Amanda's cervix was already dilated several centimeters. She was sent to Trident Medical Center and kept in special bed that elevated her feet above her head on the premise that gravity would keep those babies from progressing down her birth canal.
Martin tried to admit Amanda to Medical University Hospital, one of five hospitals in South Carolina designated by the Department of Health and Environmental Control to handle the highest-risk pregnancies, but the hospital wouldn't take her, he said. Martin said they told him the pregnancy wasn't viable at 22 weeks. Amanda's baby wouldn't survive if she was born that early, they thought.
"Obviously, that's not the answer she wanted to hear," Martin said. "I told her at the time, 'Amanda, this is very serious.'"
He prescribed a drug to stave off delivery, but it didn't work - at least not for very long. Two days later, Jayden was born at the hospital in North Charleston.
Dr. John Podraza, a neonatologist who regularly works at President's Hospital in Bethesda, Md., was filling in for a Trident neonatologist on vacation the night Jayden was born. He didn't know she was so pre-mature before he successfully resuscitated and intubated her.
"She was born in the middle of the night and nobody told me what the baby's age was," Podraza said.
In fact, Podraza said it's not standard practice to attempt those life-saving measures for babies born before 23 weeks gestation because their survival rates are so low. Even babies born between 23 and 25 weeks only survive half the time and up to 80 percent of those who make it will suffer severe neurological deficits, he said.
"It was the smallest baby that ever survived that I have seen," he said. "It was absolutely amazing. It's life right there - happening in front of you."
Later that day, Jayden was transferred to the neonatal intensive care unit at Medical University Hospital, where she stayed for the next five months. Amanda said one of her hospital bills exceeded $800,000.
"Luckily, I changed my insurance, so they covered a good portion of it. I haven't seen any big bills yet. Hopefully that won't change," she said.
Meanwhile, Martin had another baby to contend with. Jordyn was still in the womb.
"I knew in my heart that I wasn't going to deliver both babies, but I couldn't explain it," Amanda said recently at home in Round O, about 10 miles east of Walterboro.
"The doctor said, 'You're in labor, so you're going to deliver both.' But I said, 'They're in separate sacs.' And he said, 'It doesn't matter. When you go in labor, you deliver both babies.'"
Again, she insisted Jordyn was growing inside a separate amniotic sac than Jayden. The amniotic sac contains fluids that cushion the fetus throughout pregnancy. When a woman's "water breaks" during pregnancy, it's technically the amniotic sac that has ruptured. It signals the baby's arrival is imminent. Some twins develop inside the same amniotic sac; others grow inside separate sacs.
While Jayden's sac had already ruptured, Amanda speculated to Martin that Jordyn's amniotic sac was still intact. She didn't know for sure, but it offered a possibility that her second child wasn't ready for delivery yet.
"And he said, 'Amanda, you're going to deliver both babies. You're in labor.' And I said, 'I have to have hope that they're in separate sacs.' And he said, 'OK, well you're the most optimistic person I've ever met.'"
She was right. Jordyn remained in utero. Martin ordered strict around-the-clock bed rest for Amanda - with her feet elevated above her head. He prescribed drugs to stall labor and eventually stitched her cervix closed in a procedure called a rescue cerclage designed to physically seal the birth canal.
After three more weeks at Trident and two weeks at home, Amanda recognized those familiar labor pains again. This time, Medical University Hospital admitted her for delivery.
After Jordyn was born at Medical University Hospital on Nov. 22, she was also transferred to the hospital's neonatal intensive care unit. She was released on Jan. 25, almost two full months before her older twin sister.
'It's getting easier'
Six months after their harrowing arrivals, the girls seem to be thriving at home in Colleton County. Jayden is smaller than Jordyn and still has some trouble drinking milk. Both infants are confined inside until their first birthdays and only leave the house for doctor's appointments. Still, they are otherwise healthy babies.
"To me, as a Christian doctor, I think the God factor always has to come in," Martin said. "Medicine - we do what we can - but you have to realize that God is in control and leave it in his hands."
He said the potential for future health problems could be a concern for these twins. "We don't know what's down the road. I don't have a crystal ball and no one else does," he said.
That's the reason why Amanda and Matt constantly shuttle the twins back and forth to see specialists in Charleston - an hour-long trip each way. Other than that, the Seguras are mainly coping with the same issues that most new parents struggle with - getting enough sleep, figuring out why their babies are crying, finding the pacifier.
"Oh my goodness. It is hard," Amanda said. "It is so hard, but it's getting easier."
Reach Lauren Sausser at 937-5598.
Matt Segura and Jayden, when she weighed 1 lb. 5 oz. on November 25, 2013.×
Matt and Amanda Segura share raising their twins, Jayden (yellow) born at 22 weeks and Jordyn (pink) born at 27 weeks, in their Round O home.×
Amanda Segura and Jayden, when she weighed 1 lb. 5 oz. on November 25, 2013. She was born on October 17. Photo provided by the Segura family×
Matt and Amanda Segura share raising their twins, Jayden (yellow) born at 22 weeks and Jordyn (pink) born at 27 weeks, in their Round O home. Friday, May 9, 2014×
Matt and Amanda Segura and their twins, Jayden (yellow) born at 22 weeks and Jordyn (pink) born at 27 weeks, in their Round O home. Wade Spees/Staff Friday, May 9, 2014×
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