When Jenny Carter went into labor with her first child in September 1998, she and her husband, Brad, were ecstatic. The couple, from Raleigh, North Carolina, knew from routine ultrasounds that they were having a healthy boy and could hardly wait to meet him. Would he have Jenny's auburn hair? Brad's stubborn streak? No matter what the mix, the couple agreed, their son -- whom they planned to name Reece -- would be perfect.
But when a nurse laid the crying baby on Jenny's chest moments after delivery, the Carters stared at him with concern. Even though his face was scrunched from crying, they could see right away that something was wrong. Part of the baby's upper lip seemed to be missing; in its place was a gaping hole that ran up into his left nostril and through the roof of his mouth.
"Is he hurt?" Jenny cried in a panic, thinking the baby had been injured during the delivery. The nurse explained that Reece had a cleft lip and palate -- a hole in the lip and the roof of the mouth that occurs when those parts don't fuse completely during pregnancy. "It can be repaired with surgery," the nurse told her. Jenny felt a huge sense of relief. "I was just happy to hear that he was going to be okay," the 29-year-old remembers. "Once I heard it could be fixed, I didn't think about it -- I just wanted to hold my new baby."
For Brad, the situation was too much to process right away. "I was so tired and so excited about becoming a father that I couldn't get anything clear," he says. So after Jenny had been settled in a hospital room, Brad set out for the neonatal intensive-care unit -- Reece had been whisked there for a checkup shortly after delivery -- to see for himself what was going on. Walking past babies small enough to fit in the palm of his hand, he felt panicky. Then he spied Reece, who, at 8 pounds and 9 ounces, looked robust by comparison. A nurse handed the baby over, and Brad settled with his son into a rocking chair. "At that moment, I knew everything was going to be fine," says Brad, 31, who manages an auto-parts store in Raleigh. The Carters felt even more reassured when a doctor gave them the name of a well-regarded craniofacial surgeon in the area who would be able to repair Reece's cleft.
During the next two days, Brad and Jenny got their first taste of what it means to be the parents of a baby who looks different: Many of the friends who dropped by to visit went out of their way to avoid talking about Reece's condition. "He has such pretty eyes!" they would coo in overly sweet voices. Or: "He's so . . . big!"
When she and Brad brought their 2-day-old son home from the hospital, Jenny insisted on holding him constantly; she didn't want anyone else to take over his care. "He just seemed so vulnerable," she recalls. "I felt I had to be with him all the time." Some of it may have stemmed from guilt: Because Jenny is an epileptic, she'd had to take seizure-control medication throughout her pregnancy. She worried that it might have been the cause of Reece's cleft, even though doctors told her there was no way to know for sure. "I felt so bad -- and I thought I always would," she says.
Jenny wanted to breast-feed, and before she left the hospital, a lactation consultant had shown her how to help Reece latch on. What Jenny didn't realize -- and, inexplicably, the consultant didn't seem to, either -- was that the opening in the roof of Reece's mouth made it impossible for him to suck hard enough to draw more than a dribble of milk from her breast.
It wasn't until Jenny had been home from the hospital for more than a day that she began to suspect there might be a problem. Reece was crying constantly, and although he was wetting his diaper periodically, he still hadn't had a bowel movement.
Jenny called her pediatrician, who didn't have much experience caring for babies with a cleft palate; he dismissed her worries as overreaction. Finally, several days later, she demanded that the doctor see them. When he weighed Reece, the doctor gasped: The baby had lost two pounds since leaving the hospital. "He's not getting anything to eat!" he said.
Jenny was devastated by the thought that she'd been inadvertently starving her baby. The pediatrician threaded a feeding tube through Reece's nostril, down his throat, and into his stomach. Then the doctor filled a syringe with formula and passed the fluid through the tube. Within moments, Reece stopped screaming and settled down contentedly, his tummy full for the first time since his birth. The tube would remain in place over the next week, and every two hours, Brad and Jenny had to inject formula into it.
Finally, when Reece was 1 1/2 weeks old, it was time for the couple's first appointment with Dr. Gerald Sloan, a plastic and reconstructive surgeon at the University of North Carolina at Chapel Hill to whom the hospital had referred them. Dr. Sloan explained that the first surgery, to close the hole in Reece's lip, wouldn't occur until he was about 3 months old, to minimize the chances of complications from anesthesia. The second operation, to close the hole in the roof of Reece's mouth, would come when he was about a year old.
Upsetting as it was to think of their tiny baby undergoing surgery, the couple immediately felt comfortable with Dr. Sloan and his team. When she saw Reece's feeding tube, the clinical-care worker explained to Jenny and Brad that there were much simpler methods of feeding cleft-palate babies. She gave Jenny a special bottle with a Y-cut nipple that allowed milk to flow through it more easily. Jenny was thrilled when Reece immediately started guzzling from the bottle.
Jenny and Brad had taken Reece out of the house only to see his doctors. In part, they were afraid of exposing him to germs. But they also weren't sure they were ready to deal with the attention. It wasn't until Reece was about a month old that Jenny worked up the courage to go out with him in public. "I welcomed the questions but hated the stares," she says. She decided that the best way to handle people who gaped at Reece was to be straightforward. "He has a condition called cleft palate," she'd explain. Sometimes, though, people could be cruel. "It must be a crack baby," one woman commented to a companion as she passed by. "I saw red," Jenny recalls. "I wanted to turn around and slap her." Instead, she forced herself to hold her tongue. "I think that if somebody has a problem with what's on your outside, it's her problem, not yours," she says.
Although Jenny and Brad knew that their son's lip surgery would make him look like other babies, they both had mixed feelings about it. They knew the surgery was vital for their child's health but dread- ed the loss of the face that had become so precious to them. A few days before the operation, Jenny dressed Reece in a pale-blue sailor suit and took him to a photographer for a series of professional portraits to make sure that she'd never forget what he'd looked like.
On the day of the operation, Jenny and Brad sat nervously in the hospital's waiting room as Dr. Sloan closed the gap in Reece's lip, a three-hour procedure. When the couple saw their son for the first time afterward, they felt both joy and sadness. "We were so overcome by the fact that his face looked different," Brad recalls. "Don't get me wrong -- it was beautiful. But even though we knew we couldn't keep it like it was when he was born, we still loved that face."
Of course, they loved his new face, too -- and as soon as his stitches came out, Jenny documented it with another set of portraits, which hang side by side with his preoperative photos in the couple's home.
Even with one operation behind them, Jenny and Brad still had to deal with a series of medical problems related to Reece's cleft. He had reflux (frequent spitting up after eating), a problem that sometimes occurs in babies with clefts, probably because they swallow so much air. He also had repeated ear infections, stemming from the abnormal positioning of his eustachian tubes in his malformed palate.
But in every other way, Reece was just like any other infant, smiling and learning to roll over and sit up. By Christmas, he was even eating solid food. In July 1999, Dr. Sloan closed the hole in the roof of Reece's mouth with another successful three-hour operation.
Now 2, Reece is a healthy, happy toddler. The only visible reminder of his cleft lip and palate is a white scar that runs from his nose to his lip; meeting him for the first time, you're far more likely to notice his lively blue eyes and engaging smile.
Still, his physical problems aren't completely gone: He undergoes speech therapy twice a week to correct some residual problems common to children with a cleft palate -- he has trouble pronouncing letters like b and l, for instance. Before he starts school, he will probably also undergo minor surgery to correct a slight pull on his lip and a dimple on the side of his nose. And like most kids with a cleft palate, he may also need a bone graft when he's in elementary school to close the bony ridge that supports his upper teeth.
But Jenny and Brad know that no matter how many surgeries Reece undergoes, he'll always be a little different from the other kids. His scar will always be there (although, as Jenny points out, he'll someday have the option of growing a mustache over it), and he may talk in a slightly nasal tone.
To help other families who are going through similar experiences, Jenny recently started a Raleigh-Durham-Chapel Hill chapter of a national support group called About Face. She provides one-on-one support to parents of newborns with a cleft lip and palate and has arranged for local hospitals to receive the special tri-cut-nipple bottles that helped her son so much.
"The funny thing is, if I could wave a magic wand and take away the cleft and all the things Reece has been through, I'd be afraid to do it," Jenny says. "Because then this person who lights me up every single time I see him wouldn't be the same -- and he's always been perfect to me."
Cleft lip and palate are the most common facial defects in newborns, affecting 1 in every 700 infants. The condition occurs when parts of the face -- which form separately during the first weeks of pregnancy -- fail to come together as they should, probably because of a combination of genetic and environmental factors. Cleft lips vary in severity, from a small notch in the colored portion of the lip to a complete split that extends up to the nose and through the gum line. A cleft palate is an opening in the roof of the child's mouth. Clefts can occur on the right or the left side of the face, or on both sides.
During a cleft-lip repair procedure, which takes about three hours, a surgeon rearranges the skin and muscles of the upper lip, brings them together, and stitches them closed. Palate repair, a more complicated surgery that involves creating tissue flaps in the soft palate, usually takes place when a child is between 9 and 14 months of age. Cleft palate has no effect on a child's mental abilities. For more information, contact the Cleft Palate Foundation at 800-242-5338 or log on to www.cleftline.org.