If my mind hadn't been so muddled from the drugs for the cesarean, I would have shrieked for someone to tell me why she wasn't wailing; weren't newborns supposed to cry? As it was, I lay there, unfocused, while my first child was whisked away.
Fifteen minutes passed before a neonatologist knelt by my head and said simply, "Your daughter was born without a thumb on her right hand; she has a dimple over her tailbone; and she had only one artery in her umbilical cord. We have to do some tests." When my husband, Lyle, and I were reunited with Penelope in a post-op room a few minutes later, Lyle cradled her while tears slid down his face, and said over and over, "You're our baby and we're going to love you no matter what." I couldn't understand why he was being so dramatic -- of course we would love her.
I must have looked at him quizzically because he quickly recapped what the neonatologist had already told him: Penelope's three anomalies could signal serious health problems down the road. Her arms may never grow to normal length; she may have only one kidney; she probably has a heart defect; she may never walk. A little voice inside of me, a voice I'm not proud of, said, It would be better for her to die than to grow up living with such debilitating physical defects.
Over the next 24 hours, teams of specialists coursed through our room. Most came in pairs: two cardiologists, two gastroenterologists, two plastic surgeons, two geneticists, two pediatricians. They ordered X-rays, ultrasounds, blood tests. As I watched my baby being pricked and palpated, I felt oddly locked in the present. I couldn't imagine anything beyond the next tests. The only thing I remember saying was, "I hope her arms grow." For some reason, the specter of foreshortened limbs scared me more than leaky heart valves or a missing kidney.
One by one the tests came back negative. Within 12 hours we learned that Penelope didn't have a fatal genetic flaw; all her organs were present and accounted for; her heart was strong; she would walk. Except for being one thumb short, she was perfect.
Lyle and I felt like we'd dodged a bullet. Our daughter was only minus a thumb. We called our friends and told them how lucky we were. But even though I had set the tone for these exchanges, I soon became irritated by everyone's upbeat reaction. How Pollyanna-ish they were, I thought bitterly. Their kid wasn't missing a body part.
That feeling was soon replaced by a scarier one: My daughter was only a day old and already I was becoming the mother I vowed I'd never be, the type who blurs the line between her own life and that of her child's. The one who says, "We have to write a report about Ohio this weekend," or "Our soccer team went to the state finals." Just cut it out, I thought. You aren't missing a thumb. Penelope is. And while you can help her deal with the hurtful remarks hurled in the playground and the stares of strangers, it's her burden, and her burden alone.
Mary Garner Ganske wrote about children's dental care for the June/July issue.
Operation Mickey MouseI spent the first week of Penelope's life trying to do everything without using my thumb -- sort laundry, brush my teeth, pluck change off the counter. Something as mundane as eating breakfast became an exercise in frustration. After trying unsuccessfully to pour a cup of coffee with just my index and middle fingers operating as pincers, I gave up and used my thumb. I had absurd and frivolous worries about Penelope's future. Would boys want to hold her hand? Would she be able to grip a tennis racket?
It didn't take long to appreciate what the plastic surgeon had told us that first day in the hospital: Thumbs are the most important part of the hand and we should consider corrective surgery. The procedure, he'd explained, would involve shortening her index finger (by removing a piece of bone) and rotating it so it opposed the rest of the hand. She'd have three fingers and a thumb. "Like Mickey Mouse," said her pediatrician, too irreverently for my taste.
After some calling around, I discovered that this procedure is one of the most challenging a hand specialist encounters and that there are only a few dozen doctors in the country who have experience with it. I spent months doing research. I spoke with a surgeon in Dallas; I flew to a hand surgery center in Indianapolis; I interviewed two physicians in our hometown of Cleveland. At every turn, I was told that we had another option. We could do nothing. We didn't have to put our daughter under general anesthesia. We didn't have to violate that precious, tiny, scar-free hand.
I also learned that the best time for the surgery was between Penelope's first and second birthdays, when her brain would more easily adapt to the change and she could learn to use her new thumb properly. So when she was 13 months old, Lyle and I decided to go ahead with the operation. We settled on Thomas Graham, M.D., an orthopedist at the Cleveland Clinic Foundation who'd done the surgery more than 20 times. He was confident, but he also introduced us to a new set of hazards: As with any operation, there were risks -- infection, excessive blood loss. Most terrifying of all, there was the remote chance that she could lose her new thumb altogether. But if successful, the surgery would mean the difference between Penelope being able to do almost anything and her being able to do absolutely everything. We scheduled surgery for two months later.
A Thumb is BornOddly enough, when the day arrived, I was able to shelve my growing panic. There was so much else to contend with -- I'd just found out that my father was terminally ill, I was six months pregnant, and I'd recently broken my foot and was on crutches. Even as we were driving to the hospital that morning, I felt peculiarly calm, as if I were going to the grocery store or the park. My composure evaporated, however, as my baby girl was wheeled away.
I thought the whole process would last three hours, but I hadn't counted on all the pre- and post-operative procedures. Three hours stretched to four, then five, then six. Lyle and I took turns lying to each other: I'm sure everything is fine, we said as we tried not to watch the clock. After seven hours, Dr. Graham came striding around the corner. It went great, he reported happily. But when he took us to the recovery room, I was horrified. Penelope's entire arm and most of her hand were in a huge cast that was strung above her head, and she was moaning in pain, despite the morphine. I thought, Why did we do this to her? We must have been insane.
That night a nurse came in every hour to take the temperature of the new thumb. A drop of two degrees would mean circulation was compromised and Penelope might lose the digit. Fortunately, it remained stable, and as the hours inched by Penelope became progressively more comfortable. When morning came, she opened her eyes and whispered, "Bun," pointing to her favorite stuffed rabbit. It was the most comforting word I've ever heard.
With Lyle on duty, I headed to the parents' lounge to get cleaned up. While I was waiting for the shower, another mother asked what I was "in for." After I explained about Penelope's hand, she said flatly that her daughter had leukemia. When I tried to draw her out, it became clear that she didn't want to elaborate. With her unspoken terror dangling between us, I couldn't help but wonder how she found the strength to get out of bed every day, eat breakfast, brush her teeth, breathe in and out.
The second night in the hospital, as Lyle and I were lifting Penelope out of the crib, we heard an eerie clunk. When we looked down, we saw her cast lying on the floor. Panicked, I hurried to the nurse's station and said that we needed the orthopedist on call immediately. The nurse gave me a harsh look. Later, after Penelope's hand had been rewrapped, she apologized, saying she was sorry if she had been rude, but it was only Penelope's thumb. She explained that they had lost an 18-month-old to cancer earlier that day. I felt ashamed -- then angry, then confused about how I felt at all.
The UnveilingWe left the hospital after two days, charged with the Sisyphean task of preventing our rambunctious toddler from falling on her cast. Somehow we kept spills to a minimum, and after six long weeks, it was time for the cast to come off. I held my breath as a physician's assistant buzz-sawed down the middle and cracked it open to reveal Penelope's hand, red and swollen, with bits of stitches sticking out of the scar. It didn't look like it belonged to my little girl. It was as if Penelope had suddenly developed long, dark hair or dimples. But as the weeks went by and the scar began to fade, I was finally able to appreciate what an elegant job the surgeon had done. After two years I still marvel at it. Aside from being slightly slimmer, her thumb looks pretty much like a "regular" one.
Best of all, it works. Penelope quickly gained mastery over its new position. She can pick up a Cheerio, hold a crayon, pour a cup of pretend tea. And miraculously, her new thumb will grow along with the rest of her.
There will always be a meandering scar transecting her thumb and index finger, and there's no mistaking that something is "off." I find myself searching strangers' eyes as Penelope grabs onto the swing in the park or helps pay the clerk at the grocery store. I worry about her learning to count on her fingers or having to wear mittens instead of gloves. And I worry about how I'll respond when she has the verbal skills to ask why her hand looks different. But mostly I see a future filled with the more mundane vicissitudes of life: skinned knees, beach trips, science projects, proms.
A few weeks ago, Lyle asked if I still think about her thumb. Only when I look at it, I answered. Her hand has become yet another cherished body part, along with the swell of her belly, the freckle on her third toe, the warm spot on the back of her neck. I wasn't surprised, though, when Lyle said that he rarely gives her thumb a thought. He'd been much quicker to trust that nothing was going to hold our little girl back. A few weeks after she was born, he gave me a ring with an inscription that reads: "Thumbs are grossly overrated." When Penelope is old enough to appreciate the spirit of love and awe with which I wear it, I plan to slip it off my hand and place it in hers.