Born Too Soon : A Mother Gives Thanks for Miracles

I hear my 3-year-old son upstairs, riding furiously on his squeaking rocking horse. “Sesame Street’s” Ernie provides background music, singing “Rubber Duckie.” Clay joins in the song, shouting the words even before Ernie does.

In a little while, the tape finishes and the music stops. Clay climbs off his horse and lugs the recorder into the next room where his dad is watching television. “Turn the tape recorder on, please,” he asks. When the music starts up again, Clay climbs back on his horse and the concert resumes.

I’m reminded again that, for Clay, such normal child’s play is almost a miracle. If he had been conceived five years earlier, he may not have been alive today. If he had been born five years later, perhaps he would not be blind.

In 1981, I learned I have medullary carcinoma, a rare form of thyroid cancer.

Determined to Beat Disease

I was 23 and had been married only a couple of years. My husband, Harold, and I had met at Frontierland at Disney World, where he was a lifeguard and I was a hostess. Now we were living in Tampa, where he was regional manager of a landscape contracting firm and I was working at the Tampa Tribune newspaper.

The diagnosis of cancer was devastating, but Harold and I were determined to “beat this thing.” I began what would turn out to be more than two years of surgery, doctors’ consultations, hospital stays and chemotherapy treatments.

By June, 1983, small tumors remained in my lungs and liver, but my doctors thought (erroneously) that my cancer was in remission. They decided to stop my chemotherapy treatments and monitor my progress over the next few months. That decision felt right as my strength returned. I went back to work and our lives seemed to return to normal.

But one thing would not be the same. The doctors had told me one of the side effects of the chemotherapy drugs I took was sterility. This was especially difficult for me to accept because I desperately wanted children. Harold and I immediately began to explore other options. We investigated adoption agencies and enrolled in a foster parenting class. We would have our family, one way or another.

And we found that doctors are not always right. In February, 1984, I discovered I was about 10 weeks pregnant. My gynecologist recommended abortion because of my health record. My oncologist disagreed and ordered me to start coming in for checkups twice as often. The high-risk obstetrician I was referred to said that if I didn’t miscarry in the next month or so, I would have a good chance of carrying my baby full term. However, he couldn’t say what effect this pregnancy would have on my health. And he didn’t tell us about the third danger.

I spent the next three months in and out of the hospital. I would begin to bleed, think I was going to lose the baby, and then the bleeding would stop. It reached the point where I told Harold I wished I would go ahead and miscarry, so that the agony of waiting would be over.

But then, toward the end of May, the bleeding stopped. My happy oncologist said I had not looked better in three years and maybe I should stay pregnant. The baby was due in September and Harold and I began to plan our nursery. The obstetrician told me I could go back to my job as the business clerk for the Tribune. That was on May 29.

David Clayton Warren was born at 4:40 a.m. Saturday, June 2, 1984. He was delivered by an emergency Caesarean section at Tampa General Hospital. He was 14 inches long and weighed 1 pound, 13 ounces.

June 2 was not only the beginning of a new life, it was the beginning of our initiation into the world of premature birth and the Neonatal Intensive Care Unit.

Until then, “premature” meant babies that were born a little early and were a little small. Harold himself had been premature. His mom said he was two months early and weighed a little more than 4 pounds at birth. (He’s now a strapping 6-foot-2 and more than 190 pounds.)

I had had surgery a couple of years before in this same hospital and had spent some time looking through the window of the NICU at the rows of incubators with their small charges. You couldn’t see very well and I remember wishing I could get a better view of the tiny babies. I didn’t give any thought to just how small these babies could be.

Now, I had just given birth to a baby that weighed less than 2 pounds, less than a small bag of sugar. But it wasn’t just his size that made him different. This was a baby who came into the world three months before he was due. How could anyone survive that?

When I first saw my son, about 15 hours after birth, I wasn’t prepared for what I found. Although the nurses had taken a Polaroid picture of him when he was two hours old--a picture I kept clutched to my heart throughout that first day--it was nothing like the reality of that first visit.

Harold and I had scrubbed with antiseptic soap and put on sterile gowns. Because I was still weak from surgery, Harold rolled my wheelchair into a large room that was crammed with incubators, warming tables, monitors, respirators, nurses, garbage cans, tables, wires and babies. We had to maneuver around a couple of tight corners before reaching the warming table (a specially designed bed with lights above it to help maintain the babies’ body heat) that held my son.

Before me lay a tiny, bird-like creature attached to a maze of tubes and wires. He was a strange blue-black color and his body was covered with fine, fuzzy hair. Red and blue veins were visible beneath his transparent skin, which hung loosely from his body. He hadn’t had time in the womb to build up any “baby fat.” His legs were drawn up like the back legs of a frog, and his head lay listlessly on its side.

Since his lungs were too immature to work on their own, Clay was attached to a respirator to help him breathe. Machines, attached to his small body by wires and tape, monitored his heart rate and body temperature. A tube had been inserted into his navel, through which nurses and technicians could draw blood samples when needed. Later on, he would be connected to several IVs, one in his scalp, and a special feeding tube would be inserted into his stomach.

That night, when I looked at him for the first time, I did not know what all of the different wires and tubes were for; Harold and I learned that slowly over the next few days. As I sat next to Clay’s side, monitors beeping and respirators pumping all around me, I could think only one thing:

This is not my baby.

Back in my hospital room later that night, I was a bundle of nervous energy. I called everyone I could think of on the telephone to tell them about Clay’s birth. I began writing birth announcements. I received visitors. I did everything except think about the baby down the hall. If I didn’t think about the reality, I could imagine a healthy baby boy with pink cheeks and fat hands, asleep in a nearby crib. Soon a nurse would roll him in, and I could breast-feed the child I wanted so badly.

For three days I continued like this. I visited Clay, I even touched his frail skin and talked baby talk to him. But something inside me would not let go--would not admit that this was really my child. It was as if I was looking at him through a curtain.

One day I visited the unit by myself. Clay had been moved into an Isolette, a bed covered by a plastic hood that protects the infant from temperature changes and infections. Although the hood could be raised, the staff preferred to use the holes in the side of the Isolette to limit the baby’s exposure to the outside world. This is how I communicated with Clay those first few days: by placing my arm through the holes and gently stroking his skin.

I had gotten fairly used to the noise of the nursery, although I still jumped when a monitor screamed nearby, which happened often. In fact, in a strange way, I liked sitting next to Clay’s bed, watching the doctors and nurses at work. Their patients were so small and frail and sick, but most of the staff seemed to really enjoy their jobs and even found things to laugh about in this intense hospital ward. I was fascinated by the medical procedures that went on around me and I began to take an interest in the condition of the other babies in the unit.

I don’t know why this day was different. I don’t remember anything special happening before I arrived at Clay’s bedside. I only remember standing there looking at his tiny body and then beginning to cry. Until then, my tears had come from pity for myself, grief for the healthy baby I did not have and anger at God for allowing this to happen to my family. For the first time since his birth, I cried for David Clayton, the small baby in front of me, the baby I suddenly wanted more than anything in the world.

In recent years a lot has been said and written about the importance of “bonding” between mother and child. Many believe this takes place best within a few hours after birth--if that is not possible, then the bonding process will never fully take place.

I know bonding is important--I know that I had not yet bonded with Clay and he was several days old. This was the curtain standing between us. But I also know bonding does not have to take place in the few intimate moments right after birth. Standing beside Clay’s bed that day, crying those first tears for him, began a bonding process that could not have been stronger had he been with me since birth. I could now accept Clay as my son.

Taking Clay into my heart did not mean the end of his troubles. There were several times over the next few weeks we thought he would die. At barely a week old, Clay underwent surgery to repair an open valve in his heart. Today he has a scar that stretches from the middle of his back to his sternum to remind us of the incision made when his weight had dropped to under 1 1/2 pounds.

His lungs were so immature he remained on a respirator for five weeks and continued on oxygen for several months. He would frequently have apnea and bradycardia, times when he would “forget” to breathe or his heart rate would fall abnormally low. He had pneumonia and several infections.

But we were lucky. Clay survived those obstacles and avoided others common to premature babies. After three months he was healthy enough and big enough (about 5 pounds) to come home. We were ecstatic and prepared for his homecoming.

The day before Clay was to leave the hospital, he was scheduled to have an eye exam, routine for babies in the NICU. We had come through so much, we were not worried about the exam. Clay would fly through this like he had through so much before.

But this time, the news was not good. Clay had developed an eye disease called retrolental fibroplasia which destroyed the retinas in his eyes. Doctors are not sure of the cause, but many attribute it to the life-saving oxygen premature children need in their early days which causes the blood vessels in their underdeveloped eyes to grow abnormally. It was a cruel irony that the same oxygen he needed to live would a few months later cause him to be blind. Also, doctors say that today retrolental fibroplasia is becoming more and more rare because of better control of the oxygen supply.

Belief in God

Three years ago, Harold and I were not sure what the future held for us. Neither one of us even knew a blind person and suddenly we were charged with raising one. We held on to the belief that God never burdens you with more than you can handle, and hoped that somehow we would learn to care for our son.

We read books and articles, listened to doctors and counselors, and talked to other visually impaired people to learn as much as we could. But we found our best teacher was Clay himself, and the most important lesson we learned was to treat him as we would any other child. To us, he is not a blind person. He is a person who happens to be blind.

Not long after Clay was released from the hospital, my husband’s employer transferred us to Orlando. As the cancer in my lungs grew worse, I finally had to quit my job. Ironically, I have to stay hooked up to an oxygen tank most of the time these days, like Clay in those first few months.

Today Clay is a happy, healthy little boy who likes to eat french fries and can climb to the top of the highest playground slide all by himself. He walks anywhere in the house, straight through the middle of the doorways, unless somebody has moved the furniture or placed something in this way. At age 18 months, it took him just one day to learn his way around the house of his granddaddy and grandmother in Connecticut.

Clay recently began preschool here, where specially trained vision teachers and mobility instructors work with him to show him such things as how to use a spoon and how to walk using his arms as “bumpers” to protect himself from bumps and bruises. A school bus picks him up every morning and he climbs aboard by himself for a 35-minute ride.

He’s also learning nursery rhymes and how to count, and I’ll put him up against any child his age--sighted or otherwise--when it comes to reciting the adventures of Winnie the Pooh. He even recites it with a British accent, the way Carol Channing does on the tape.

Clay’s dad and I have learned much from this little boy. His patience, determination, and relentlessness to do whatever he puts his mind to is remarkable. I do not mourn the things he cannot do because of his blindness; I thrill in the possibilities available to him.

And I never forget to say thank you for the miracles.