The tiniest of survivors
By Karen Goldberg Goff
THE WASHINGTON TIMES
June 19, 2005
The answer almost always is "no."
One time, Benjamin picked a crumb off the table. "Was I bigger than this speck?" he asked. His mother assured him he was. Benjamin pumped his little fist in the air with excitement.
These days, Benjamin is bigger than a lot of specks -- and a lot of children in his kindergarten class in Herndon.
Mrs. Fleisher and her husband, Ric, can hardly believe he's the same son who was born 14 weeks early. Benjamin weighed 2 pounds, 3 ounces when he arrived on April 6, 1999, more than three months premature after a troubled pregnancy. His twin sister, Anna, had died in utero the day before.
It was a rough start for Benjamin, as it is for many babies who are born too soon. Benjamin stayed in the hospital for 10 weeks, helped to breathe by a ventilator and helped to eat by a feeding tube. He had an eye condition common to preemies and endured several blood transfusions.
Six years later, there is little evidence of the fragile baby. Benjamin can carry a tune, read well above grade level and squabble with his 8-year-old brother, Jack.
"When Benjamin is running through the house singing, I think, 'How can I ever have worried about his lungs?'?" Mrs. Fleisher says. "I know no one is perfect, but Benjamin is about as perfect as a kid could be."
Prematurity is a more common condition now that medical advances have enabled doctors to save babies born earlier than ever. Of the more than 4 million births in 2002, nearly 480,000 occurred prior to 37 weeks gestation. A full-term pregnancy is 40 weeks. According to the March of Dimes, about 100,000 of those premature children will have some type of lifelong disability.
"When I started practicing in 1980, the biggest concerns were the children born at 28 weeks," says Dr. Billie Short, a neonatologist at Children's National Medical Center in the District. "Those kids are now much less of a concern. We used to look at 28-weekers and say that half would have significant medical problems. Now we're down to 20 percent."
The chances of survival have grown for babies born at 23 or 24 weeks, Dr. Short says. However, nearly half of those children will have long-term problems, she adds.
Prematurity may affect a child in many ways. The earlier the baby arrives, the less developed the baby's body systems will be.
Preemies are at risk of having breathing problems because of underdeveloped lungs; bleeding in the brain, which can lead to motor-skills problems, learning difficulties and cerebral palsy; patent ductus arteriosis (PDA), a heart defect; necrotizing enterocolitis (NEC), an intestinal problem that can lead to long-term damage and feeding trouble; and retinopathy of prematurity (ROP), an eye condition that can lead to impaired vision.
Many issues can be treated with surgery, drugs and the passage of time, Dr. Short says. Some children, such as Benjamin Fleisher, leave after an extended stay in the neonatal intensive care unit (NICU) and have no lasting effects from their early start. Others have lifelong health problems or disabilities. That is why follow-up care is extremely important, Dr. Short says.
"You can only see so much in the NICU," she says. "You see much more about how these children are doing as they go through developmental stages. I am always amazed by babies who we were concerned about who come back to see me and look great. Follow-up can make the outcome different."
'Miraculous Jack'
The colorful lettering on Jack Gillespie's baby scrapbook says, "Miraculous Jack." The pictures and mementos back up the title. Jack, now 4, was born 16 weeks early and weighed 1 pound, 13 ounces. His little footprints were smaller than a car key; his medical files were bigger than the phone book.
"Before I had Jack, we were so arrogant," says Jack's mother, Kelley Gillespie, an event planner who lives in Vienna. "My husband, [John], and I didn't know if we would subject a child to a life of special needs. But when we were in that situation, we were absolutely convinced we had to do everything in our power to save our child."
Jack had most of the problems of prematurity. Among them: severe ROP and operations on both eyes, and NEC, the intestinal problem common to preemies. Jack eventually had about half of his colon removed. He also had breathing troubles, sepsis and several infections, his mother says.
"After everything, he had no brain bleeding," Mrs. Gillespie says. "That is why he is doing so well today. He is doing great now."
After Jack's 100-day hospital stay, the Gillespies embarked on a huge follow-up program that included, among others, a cardiologist, a nutritionist, a physical therapist, an occupational therapist and an ophthalmologist.
Jack's main problem today is his vision. He wears thick glasses and has to make adjustments to compensate, Mrs. Gillespie says.
"He can't see very well, so he can't run very well," she says. "The soccer field overwhelms him. We went to the Wiggles concert, and we had to sit up front."
Jack also has slight difficulties with fine and gross motor skills, sensory problems, and eating and socialization problems. He attends a typical preschool in the morning, then goes three afternoons a week to a Fairfax County Public Schools-sponsored special needs preschool where he can work on his residual medical problems. The Gillespies are hoping things will even out by the time Jack is in kindergarten.
"Some of these things you never know if they are preemie-related or are normal 'kid things' he will grow out of," Mrs. Gillespie says. "He is sort of on the brink of being normal. Every year something different comes up. Still, I feel totally lucky. Every time I look at him, I can't believe it."
The Gillespies went on to have another son, Finn, who was born full-term two years later. Mrs. Gillespie tries to help other parents in the same situation as she was four years ago. She works with the March of Dimes to help raise awareness of prematurity. She also volunteers at Inova Fairfax Hospital's NICU once a week. Her job is simply to hold and rock the tiny newborns.
"You never stop worrying," Mrs. Gillespie says. "I still have dreams at night about losing [Jack]. He was so fragile in the beginning."
An educated consumer
When Jeff Stimpson is trying to chase his son, Alex, through New York's Central Park, he says he is reassured that Alex has no major motor impairments.
Alex, who just turned 7, was born at 27 weeks gestation and weighed 1 pound, 5 ounces. He had severe breathing complications and stayed in the hospital for nearly a year. Mr. Stimpson recently published a memoir of life with his son, titled "Alex: The Fathering of a Preemie."
The lung issues largely have resolved themselves, but other problems remain. Alex has been diagnosed with a form of autism. He is small and has very limited speech. He is not toilet trained. He is being evaluated for the possibility of epilepsy.
"I don't know if there is a connection," Mr. Stimpson said from his office in New York City. "We don't know if Alex's conditions are a result of him being a preemie. We've never really received a reason. The doctors just don't know. It is very much a crap shoot. The idea of survival itself for preemies is so new."
Mr. Stimpson says he wrote his book partly as a coping mechanism for all the stress he and his wife, Jill, have endured. The couple also have another son, Ned, born full-term two years after Alex.
Mr. Stimpson says he has received quite an education in the medical system and wants to help other parents of preemies make the best decisions for their children.
"By no stretch should parents swallow the 'miracle baby' thing," he says. "You have to think much more like a consumer. The hospital we were in had some success with preemies, but you have to see which one has [success] in your particular situation. You have a responsibility to seek what is best for him."
Mrs. Fleisher and Mrs. Gillespie can't say enough good things about the NICU staffs that took care of their sons. The Gillespies invited Jack's neonatologist to the baby's christening. Mrs. Fleisher was sad the day Columbia Hospital for Women closed because she enjoyed returning often with Benjamin to show him off to the nurses who had cared for him.
"It was the biggest reward for me to take him to the NICU and have him say, 'Now I'm big and strong,'?" Mrs. Fleisher says. "I thought he got spectacular care. Everything the staff did meant life or death for my child."
Mr. Stimpson sees his family's ordeal from a different perspective.
"NICU staffs are getting better," he says, "but they still need acclimation of dealing with families. I'm not sure I want a touchy-feely doctor -- I want them to know the science. The nurses and social workers, though, need some sense of the emotional burden families are going through."
Getting good hospital care and good follow-up care is a two-way street, Mrs. Gillespie says. She says the best thing parents of new preemies can do is to read and learn as much as they can about their baby's condition, treatment and chances for recovery.
"The best thing you can do is be your own advocate," she says. "No one is going to take control of your child's care the way you are. We went to the NICU as often as we could. We convinced everyone he was going to survive.
"We're so thankful he is here," she says. "Every day is a blessing."
More info:
Books --
"The Premature Baby Book: Everything You Need to Know About Your Premature Baby From Birth to Age One," by William Sears and Martha Sears, Little, Brown, 2004. This book by popular author and pediatrician William Sears and his wife has advice for parents on the first year with a tiny preemie.
"Alex: The Fathering of a Preemie," by Jeff Stimpson, Academy Chicago Publishers, 2004. Journalist Jeff Stimpson recounts the roller-coaster ride that followed the premature birth of his son Alex.
"Your Premature Baby and Child: Helpful Answers and Advice for Parents," by Dianne I. Maroney and Judy Bernbaum, Berkley Publishing Group, 1999. This is a good general book with medical as well as parenting information.
"Living Miracles: Stories of Hope From Parents of Premature Babies," edited by Kimberly Powell and Kim Wilson, St. Martin's Press, 2001. This book is an inspiring collection of stories written by parents of preemies.
Association --
March of Dimes, National Capital Chapter, 2700 S. Quincy St., Suite 220, Arlington, VA 22206. Phone: 703/824-0111. Web site: www.marchofdimes.com. March of Dimes, the nonprofit organization aimed at improving infant survival and reducing birth defects, recently began a campaign to raise awareness of premature births. The group has local events, statistics, medical advice, support information and publications.
Online --
Premature Infant (www.premature-infant.com) is a site founded by Dianne Maroney, a Colorado nurse and the mother of a premature daughter. The site has articles and personal stories.
Preemies Today (www.preemiestoday.com), is a local support organization founded by parents of premature babies. The group has a newsletter, family activities and play groups, support groups, and other resources.
Preemie Parenting (www.preemieparenting.com) is another site founded by the mother of a preemie. It has advice from parents, articles and links to other sites of interest.
Preemie Magazine (www.preemiemagazine.com), is a new magazine and Web site recently founded by a Northern Virginia mother of a preemie. It has articles, resources, support group information and message boards.
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