Against the odds: A story of courage, determination and two tiny babies Published Oct. 29, 2008 By Karen Abeyasekere 100th Air Refueling Wing Public Affairs RAF MILDENHALL, England -- They shouldn't be here yet. They were supposed to be a New Year's present for their parents. But these two tiny babies, Eric LeVon Frazier II and Alexis Rain Frazier, are here, currently living in the neonatal intensive care unit of a British hospital, hooked up to tubes and machines, and courageously fighting for their lives. With a due date of Jan. 1, 2009, the Frazier twins were born prematurely at just 23 weeks and three days gestation period - barely more than half the length of a full-term pregnancy - and made their way into the world Sept. 6 at 8:17 a.m. and 9:01 a.m. respectively. Eric (born first) weighed just 1 pound, 5 ounces at birth. His twin sister, Alexis, was just 1 pound, 3 ounces. Between them they weighed scarcely more than a regular-sized bag of sugar. But these babies are fighters. Given less than a 10 percent chance of survival for both babies, the doctors predicted Alexis wouldn't survive one month. But she's still here, and like her twin brother, still struggling to survive. Their parents, Tech. Sgt. Barry Frazier, 100th Air Refueling Wing Legal Office, and his wife Mandy, are hoping and praying the doctors are wrong, and so far their new babies are holding on with everything they have. The doctors and nurses on the neonatal intensive care unit at Norfolk and Norwich University Hospital are working night and day to preserve these tiny lives. The Fraziers older son, Barry Frazier III, was also born prematurely at just 26 weeks. He reached his second birthday Oct. 15. Mandy went into labor with the twins Sept. 2 (appropriately enough, the day after Labor Day) when her contractions started early. Her husband took her to RAF Lakenheath hospital, and said the doctors examined her and told them she was three centimeters dilated. Her transportation to another hospital by ambulance was immediately arranged. RAF Lakenheath is a Level I nursery, according to an e-mail from Maj. (Dr.) Shayne Stokes, 48th Medical Operations Squadron, Pediatric Flight commander and medical director. That means while they can resuscitate and stabilize an infant at any gestational age, they can only provide ongoing care to infants 35 weeks or greater gestational age who remain stable. (Level I is basic nursery care - newborns are stabilized and resuscitated and ongoing care is provided for stable newborns 35 weeks or older; Level II is step down NICU - ongoing care for infants requiring additional nursing care; Level III provides full NICU - ongoing care for critically ill newborns.) "Those born at less than 35 weeks gestational age, and those requiring Level II or Level III neonatal care are transferred to British hospitals with (NICUs)," Dr. Stokes said, adding they have a good relationship with all local area NICUs. A call was originally made to Addenbrookes Hospital, Cambridge, but there were no openings available, so the Fraziers were taken to Norfolk and Norwich University Hospital. "At first, everything seemed like it was going 100 mph - it went so quickly and seemed so scary," said Mandy. "It seemed like it was a big rush, but it really wasn't." Her husband agreed. "Seeing the looks on the faces of the doctors at RAF Lakenheath, it seemed like they were saying, 'We have to get them out of here now'," he said. "It was scary, but they did what it took to get us here (Norwich hospital). I could see the concern on the face of the doctor who was treating my wife - she told me to go in and comfort her. I think otherwise I would have broken down in front of Mandy." Babies born so early are considered to be at the threshold of viability. That means they are right on the edge in regard to what treatment they can be offered, wrote Dr. David Booth, Norfolk and Norwich University Hospital Department of Paediatrics, consultant neonatologist, in an e-mail. "Some countries, such as the Netherlands, don't routinely make any attempts to help infants under 25 weeks gestation survive. In this country, we look at infants of 23 weeks gestation on a case-by-case basis," he said. "We make an assessment of them when they are born and decide from there what we can sensibly offer. The chance of survival for a 23-week infant is approximately 10 percent, with a maximum of half of those surviving without disability." The long road to pregnancy For the Fraziers, their babies mean the world to them, not least of all because they went through such huge personal challenges to become pregnant in the first place. After trying for several years, it became obvious that Mandy wasn't able to get pregnant naturally. Desperate for children, the couple finally decided their only option was Intra Uterine Insemination (artificial insemination), which is similar to In Vitro Fertilization, but eggs aren't harvested from the mother. Mandy had to endure having shots for two weeks, given by her husband, to get her follicles to grow to a certain size. Once they reached that size, she was given another shot to make her ovulate. Thirty-six hours later, they went to the doctor for the final part of the procedure. She became pregnant after the first attempt. Their first child was born 26 weeks premature, at Wilford Hall Medical Center (at Lackland Air Force Base, San Antonio, Texas) and had to stay in hospital until almost his due date. "After that, I pretty much refused to have any more children, but some people in the NICU told me although I thought that then, I would eventually change my mind and want to have another one," Mandy said. When their first son was 8 months old, they decided they wanted another child. Again, they had to go through the emotional stress of the IUI process to become pregnant. With her second pregnancy, Mandy was in a lot of pain almost immediately. She couldn't walk very much - maybe 10 to 15 minutes at a time, before she was in pain for the rest of the day. Her husband insisted she took lots of rest when she was about eight to 10 weeks pregnant. When she reached 18 weeks, he made sure she had complete rest, not letting her lift a finger. Between jobs (in addition to working at the legal office, Sergeant Frazier also has a part time job at RAF Lakenheath) he washed clothes, did housework, vacuumed, and looked after their son as much as he could. But at only 23 weeks, Mandy gave birth to Eric and Alexis - four months before they were due. "It kinda feels like it's my fault, knowing that I had one premature baby already," she said. "But we weren't positive the second one was gonna be that way. I've heard of so many people (since her son Barry was born) that had a premature baby, then had no problems with any of their other children. "You get the really tough beginning part," Mandy said, "but when you get to touch them, hold them, change their diapers and feed them, then it gets a little easier." The road ahead Aged 6 weeks and 2 days, Oct. 21, both babies weighed about 1 pound, 13 ounces. Unfortunately, the extra weight isn't just bodyweight - some of it is excess fluid that has built up. Their feet are barely longer than the diameter of their daddy's wedding band and from the top of their heads to their waists is about the size of a dollar bill. According to Dr. Booth, the chances of survival increase if premature babies survive the delivery process, and increase further still if they survive long enough to be admitted to the neonatal unit. "For the 90 percent who don't survive, many of those will die immediately or in the first few days after birth. (The Frazier twins) have a much better chance of survival now they are more than 1 month old - however the chance of survival still can't be quoted as 100 percent. For these babies, there are still no guarantees," the British doctor said. Sharing their story Before having their first son, the couple had never known anyone who had a child prematurely. Having learned so much from this experience - twice over - they say they are sharing their story because they want other people to know more about it. "We want to raise awareness of this, and encourage those either pregnant, or thinking of having children, to read books or pamphlets on the subject, and learn more about it, just in case it should happen to them," Sergeant Frazier said. Of the 30 premature infants (less than 37 weeks gestational age) delivered at RAF Lakenheath this year, just eight (including the Frazier twins) needed neonatal treatment from other hospitals, according to Dr. Stokes. Just four of those babies were delivered at the base hospital then transferred to local NICUs. The Frazier twins and two other babies were born at local hospitals after their mothers were transferred there. Spending five or six hours a day at the hospital in Norwich is starting to take its toll on the couple. Thankfully, Mandy's brother is currently staying with the couple and helps look after their two-year-old son. She said that being away from her son is hard - because of being at the hospital so much, this is the first time she's left him with anyone else. "Because of what we went through with him being premature, I've never felt comfortable leaving him with anyone," said Mandy. "It's a big adjustment for him, and he cries a lot, but we can't take him to the hospital as much as we'd like because of the risk of germs. He likes spending time with his Uncle James though." She said that on the occasions they do take him to the hospital, he knows something is going on, and seems to recognize the sounds. "By the look on his face sometimes, he seems to remember something, or the sounds are familiar to him, such as the beeping," said his mom. Still waiting When a baby is born, the parents are usually able to hold their child immediately, but that's not the case for the Fraziers. Mandy has only been able to hold Eric once, and that was only for about 10 minutes. "But even that seemed to be too much for him," she said sadly. "He was on CPAP (continuous positive airway pressure) for respiratory ventilation, but had to be put back on a ventilator the next day." It wasn't until Alexis was 33 days old that her mom got to hold her. After 37 days, Barry finally got the chance to hold Eric for a few minutes. He still hasn't held Alexis. His first son was 54 days old before he was finally able to hold him in his arms. Thankfully, they are allowed to at least put their hand in their babies' incubators, then Eric and Alexis can grip their parents' fingers with their tiny hands. "When I first touched Alexis, I couldn't feel her at all," Mandy said. "Her touch was lighter than a feather. Eric touching my finger did feel like a feather. The one time I did pick him up, it was like holding a potato - although a potato is probably heavier. "It's so hard to hold them properly because they're so small, and have all the tubes and wires on them," she added. "We've had three babies, and together their birth weights don't even weigh the same as a full-term baby - combined, they weighed 4 pounds, 10 ounces." A touching experience In the early stages, Dr. Booth said minimal touching is encouraged. "That's not the same as no touching," he said. "It's to give the infants the closest approximation to still being in the womb. However, once they are stable, we encourage touching, talking, stroking and eventually, holding the infants to help with the attachment and bonding. It starts with a little, infrequently, and as the babies become mature and more stable, we encourage it more and more." Being so tiny, the babies have to be tube fed; Eric gets a tiny amount of breast milk through a syringe. Alexis can't yet have breast milk, but is given fats through an IV line. "But the nurses do allow us to do a lot of stuff for our babies; I like that," said Mandy. In England, seven percent of babies are born prematurely (according to figures for 2005 from the Office of National Statistics). In the states, the equivalent statistics body quotes 12 percent, said Dr. Booth, explaining that premature means born at less than 37 weeks. He said the number of babies born at less than 24 weeks in the United Kingdom was one in 1,000. Of 650,000 babies born here in 2005, only 650 were born at less than 24 weeks. Working together to save lives The couple said they've been given outstanding support from the doctors and nurses at Norfolk and Norwich University Hospital. "They're great here. They've always given us every bit of information possible," said Barry. "We've always asked to know the worst news first, and they've honored that request every time. It's been a good experience, but it's been really nerve-wracking for me. I feel like I'm so big and rough, and I'm scared I'm gonna break them." Mandy said she's especially impressed with the nurses. "They talk to the babies as they do stuff, whether it's giving them medicine or feeding them, and they treat like them like they are their own children," she said. "It's really comforting, knowing they're doing all they can and the nurses are being really gentle with them. "It's been really hard knowing that we're not supposed to see them yet. It's especially hard on the journey to the hospital, knowing you'll only see them for a few hours, and then having to turn around and leave. But when (they start getting stronger), that is much harder for me to deal with (emotionally)," added Mandy. "You finally get to hold them for up to several hours at a time, and be more intimate with them, but then you have to put them back in the incubator and leave them while you go back home." When the couple's first son was born, they saw a counselor to help them deal with the situation. "She would always tell us, 'Keep the faith; don't give up on your children - believe that they're gonna make it through, and do everything you can for them,'" said Mandy. "We've always remembered that." Her husband said they are both strong believers in God, which has helped them get through this, knowing that their family and friends back home are praying for them. "I was reading my bible recently and found a passage that said, 'Pray without ceasing,'" he said. "That's what we try to do. I thought I was the strongest guy in the world emotionally until this happened. But it's like a rollercoaster ride, and you can't control it - you just have to jump on and be ready for whatever comes." Because RAF Lakenheath's hospital doesn't have neonatal facilities to provide ongoing treatment to premature infants less than 35 weeks gestational age, the facilities at British hospitals (Norfolk and Norwich University Hospital; Addenbrookes Hospital, Cambridge; and West Suffolk Hospital, Bury St. Edmunds) are available for Americans to use when needed, and the Fraziers say they are eternally grateful for that. "To us, this is the most important thing they could do," Mandy said. "Without them, we wouldn't have our babies." Sergeant Frazier echoed her feelings. "Having these places around -it's not going to be perfect every time, but having them close enough where we can drive every day and see the babies, and be there with them at the drop of a dime if somebody calls, it's comforting knowing we can do that," he said. Dr. Booth said the twins have done remarkably well, and he is very pleased with their progress so far. "Their parents are the model of sensible, caring and concerned parents, presented with a nightmare scenario out of their control. We on the unit are very impressed by how well they have coped with this experience," he said. Eric and Alexis are still fighting for their lives. Every day their progress goes up and down. But they've beaten the odds so far and made it through seven weeks. If all goes well, these courageous little babies will get stronger by the day and join their older brother at home by the New Year. That really would be a gift for their parents.