It was a beautiful day in September 2003, every tree a torch. In a delivery room in Paoli, Pennsylvania, Susan Ritchie was pushing with all she had, her husband, Mike, by her side. She felt the baby's head press against her pelvis, and she heard the sound of his heartbeat from the monitor fill the room. Minutes later, 7-pound, 7-ounce Griffin Ritchie shouldered his way into the world, eyes wide open. Olive skin. Old-man hair. The doctor laid him on Susan's chest: a perfect newborn.
Or so the Ritchies thought. What no one knew at the time was that Griffin's blood carried a flaw so serious that, in the months to come, it would almost kill him.
When the Ritchies brought Griffin home, he was fat and fine. But after his first three months, everything changed. He got sick several times with what seemed like a bad case of the flu. By January, he started coughing repeatedly. He lost weight, grew irritable and fussy, and began running a fever. Again and again, Susan brought him to the pediatrician, and again and again, he was prescribed antibiotics that did no good.
It was February when Susan, who worked in marketing, and Mike, a businessman, finally wrapped up 5-month-old Griffin and, on his doctor's suggestion, brought him to the Alfred I. duPont Hospital for Children, in Wilmington, Delaware. There, his condition continued to deteriorate. As nurses nosed an IV needle into his arm for fluids, he screamed. At one point, Susan, completely distraught, crawled into Griffin's crib. Pressing him against her, she could feel his ribs and see the pulse puttering in his scalp. "I didn't allow myself to think he would die," she recalls. "I just thought of the next step ahead."
After five grueling days of multiple tests for multiple conditions, including cystic fibrosis -- all of which turned up negative -- the doctors finally decided to look at Griffin's immune system itself. And when they did, they discovered his problem: There wasn't any immune system. "You mean to tell me he's like that boy in the bubble?" Susan said when the doctors explained Griffin's condition to her and her husband.
Griffin was diagnosed with severe combined immunodeficiency (SCID); he was lacking in infection-fighting T and B cells that are necessary for survival. Without an immune system, he was going to very quickly -- and completely -- lose his ability to fight infection.
Lauren Slater's last piece for Parenting was "Kids and Music," in the September 2003 issue. Additional reporting for this piece by Jennifer Kelly Geddes.
A tough road aheadSoon after Griffin was born, the hospital had performed on him the six standard newborn tests required in Pennsylvania at the time -- for disorders such as sickle-cell anemia, hypothyroidism, and galactosemia. The doctors told the Ritchies that everything was fine, and Griffin appeared to be just that.
But he wasn't tested for SCID -- and, in truth, the condition isn't so easy to screen for. Testing is a multistep process (some blood work, some analysis), and because SCID is considered relatively rare on the roster of diseases that you can test for in a newborn, it hasn't been added to the standard screening list. (Experts estimate that the illness affects anywhere from 1 in 50,000 to 1 in 500,000 babies.) Still, some doctors are advocating for SCID screening in newborns on a population-wide basis because, they argue, it's at least as common as many of the other illnesses that have been added to the screening guidelines.
Could the Ritchies' doctors have caught the problem during prenatal testing? Not in Griffin's case. Like so many couples, they'd gone for genetic testing during pregnancy, but there was one glitch. Susan was adopted; she had no idea of her biological family's history of disease. (As for Griffin, doctors were sure his condition was X-linked, meaning that someone in her biological family had, at some point, died from the disease.)
Twenty years ago, a SCID baby like Griffin didn't survive if he tried to live outside an antiseptic world -- that is, without a bubble. But with the advent of stem-cell transplants from the bone marrow of a parent or sibling, a baby who is diagnosed within the first three and a half months of life now has a 97 percent chance of survival. In Griffin's case, by the time he was diagnosed at 5 months, doctors said his chances were at 69 percent. The odds were still in his favor.
Keeping up hope"I will not lose my baby," Susan Ritchie told herself when she heard the daunting numbers Griffin was up against. A poised woman who speaks with a gentle southern twang, she pulled herself together and over the next several days pored over scads of research. Then, after two doctors who had treated Griffin at duPont suggested it, she arranged for him to be transferred to Duke University Medical Center, in Durham, North Carolina, which specializes in treating SCID.
On March 21 she and Griffin flew to the hospital via airplane ambulance; Mike stayed behind to work and take care of his 9-year-old twins, Catie and Connor, from a previous marriage.
At the hospital, Griffin was immediately placed in an isolation room and tended to by a team of doctors and nurses -- all masked, gowned, and gloved. Susan was ready to donate her bone marrow right away.
Nine days passed. Susan was with her son every possible minute of the day, watching him fade in and out of alertness. She read to him, played with him, held him, and rocked him. She slept in his room every night, never leaving him. She spoke to Mike many times a day, and he came to visit on weekends. But she missed him and the twins terribly. And then, on March 30, when 6-month-old baby Griffin was finally well enough, Susan -- belly down on an operating table, under heavy anesthetic -- was, quite literally, pierced to the core: Doctors slowly inserted a needle into her pelvic bone, and up through the tubing came a thick red liquid -- her bone marrow, stocked with stem cells that would, they hoped, migrate to Griffin's marrow upon entering his body and later turn into infection-fighting immune cells. "That night, the doctors came up to Griffin's room and put my marrow into his IV line as my husband and I sat there watching," Susan recalls. "It was hard to believe something this potentially lifesaving could be so simple."
Nothing left to do but waitNow the Ritchies had to wait. It takes a baby between three and four months to develop immune cells from a parent's bone marrow, and the process doesn't always work; an infection can develop, for example. During that time, Griffin had to stay put in the hospital, and Susan stayed right by his side. He was a very sick baby.
When Griffin's doctor tested him 12 weeks later, she saw a few stray T cells, but not nearly enough. "You just can't believe it at first," Susan says. "It takes a while for news like that to sink in. I went to have lunch in the cafeteria, and I just sat there with my sandwich and cried." She was trying to stay optimistic but was still sick with worry that the transplant might not work.
The nights were hardest for her. Sometimes she'd find herself thinking about Griffin's clothes, hanging at home in his room -- the brand-new sailor shirts, the blue overalls, the rompers. There were so many outfits that he'd never even wear because by the time he'd get out of the hospital -- if he got out -- he'd be too big for them.
One night Susan decided that, once Griffin got better and they were home again, she'd sew swatches of his unworn shirts and pants together so that someday he could cover himself with something tangible from his babyhood that was perfect, untainted. As she pictured herself sewing, she could see the final product: She imagined the quilt, the tiny, tight stitches, the satin inlays. It helped her envision the day when she'd leave the hospital with her beautiful baby -- all healed. She could see this quilt, but what she couldn't see was Griffin as a man. She couldn't go there because hoping hurt too much.
Time to go homeMonths went by. Spring turned to summer. At times Susan forgot what it felt like to live in a regular home without the boom-boom-hiss of Griffin's machines, the blinding hospital lights, that sickening antiseptic smell. Had she ever actually had a garden, a dinner table where she sat with her husband and the twins and lingered over home-cooked meals? It seemed so long ago, her former life.
Meanwhile, Griffin was responding to the transplant, slowly. Susan brought in a playpen and toys -- which she cleaned constantly with special disinfecting wipes -- to teach her baby the simplest things: Here's how to grasp your rattle, Griffin. She talked to him nonstop so he would learn language. Daddy misses you, Griffin.
And then, in late August last year, just shy of Griffin's first birthday, he had another blood draw. This time, great news: Lab tests showed swarms of functioning T and B cells. "Griffin," Susan said to her son through tears when his doctor gave her the rundown of her baby's condition, "we can go home now."
Griffin had entered the hospital at 5 months. He was now 11 months and had only just learned to sit. He didn't know how to eat, having always been fed through a tube. He couldn't crawl or babble. But he could catch up, his doctor assured Susan -- babies almost always do. Still, she would have to teach hers what others get to discover naturally, in their own time: how to be a baby.
Back to lifeThese days, back in Downingtown, Pennsylvania, where the Ritchies live, Susan, Mike, Griffin, and the twins have all settled into a comfortable rhythm that doesn't involve nurses and blood draws. When Griffin was first home, he cried and cried -- frightened, Susan thinks, of his strange new world outside the hum of his hospital room. Not anymore. Now he's a curious, babbling, smiling toddler. Developmentally, he can do many of the things babies his age can, like climb and laugh. But he's behind in certain areas, such as eating -- he's still largely fed through a gastrostomy tube at night because he never got a chance to learn how to eat during all the months he was hospitalized.
Several times a week, Griffin has therapy to help him catch up with eating and walking and talking. His immune system is still weak, which means he can leave the house for things like daily walks, but he can't go to crowded public places. (He gets a monthly dose of antibiotics.) He loves seeing the kids in the neighborhood, who all know they can talk to him but not touch him. His cell count is tested every three months, and the expectation is that it will continue to grow. If all goes well -- and his doctors think it will -- they hope by age 5 he'll develop enough T and B cells to allow him to function fully in the world.
Sometimes, stepping back from Griffin's stroller to take his picture, Susan Ritchie has a strange sensation: She is fast-forwarding through time. She realizes she can do it now -- she can take that chance, see her son as a man. He has a wave of dark hair across his forehead. He's standing in a kitchen. There's a teapot on the stove, a garden in bloom they both can see from the window. Mom, he says. Mom. His voice has grown deep, with an echo. It is a full, rich voice, and Susan knows it is surely a healthy Griffin in the future, in his full, rich life.