Jane Parker tells Janice Tyrwhitt of the tiny gadget that keeps her child alive
MY BABY WEARS A SECOND HEART
Jane Parker tells Janice Tyrwhitt of the tiny gadget that keeps her child alive
A GRATEFUL MOTHER’S STORY OF HOPE IN A HEARTBEAT
WHEN LISA WAS BORN, I asked the question every mother asks, “Is my baby all right?”
“Yes, she’s crying, she's alive!” the doctor said — and then he added, “But something's wrong with her heart.” Though I’d been conscious all through her birth, I was still groggy, and it wasn't until next day that I realized he had expected her to be stillborn. Some vital connection in our daughter’s heart was missing; it was beating only thirty to forty times a minute, less than one third the normal rate. If she had been born a few years earlier she would certainly have died. As far as her doctors know, she’s the first child with a heart rate of less than forty at birth who has survived despite the persistence of the low pulse rate.
Today she’s alive, thanks to an electrical instrument no bigger than a small transistor radio. It’s called a heart pacer, because its batteries produce a current that shocks Lisa's heart into beating regularly. Since she was six weeks old—she's fifteen months now—she has worn a pacer in a special shirt pocket or pinned to a bandage around her chest. Two wires run from it into her small body just below the ribs, ending in tips sewed directly to the muscle of her heart.
We were living in Georgetown, Prince Edward Island, and on March 16, 1965, when the baby seemed due to arrive, my husband took time off from his job—he’s a machinist—and drove me thirty-five miles to the doctor’s office in Charlottetown. The doctor listened with his stethoscope for a long time, then asked, “Can you feel movement?” I could, but it wasn’t strong. Even then I didn't suspect trouble. We adopted our boys Wade and Scott, who were four and two then, and I’d never had a baby before.
I didn't realize that the doctor could scarcely find Lisa's heartbeat because it was so faint and slow. He sent me into hospital in Charlottetown and Lisa was born just before midnight.
She weighed nearly eight pounds and looked so strong and healthy that I couldn't believe she wasn't perfect. Dr. Ross Parker, a young pediatrician (and not related to us) came to examine her and reassured us by explaining that some babies born with slow hearts increase their rate spontaneously within forty-eight hours. But Lisa didn't, and Dr. Parker told me, “We’re really in trouble.”
Until she was three days old the nurses fed her, and when she came to me for her bottle at last, I saw that she was much paler than the other three babies whose mothers shared a room with me. Dr. Parker isn't the sort of man who hides anything from you, and he warned us that Lisa would probably die. He kept her in hospital when I went home, and later that week he asked Frank and me to come to his office. He told us that Lisa had been born with a heart block, a defect in the electrical conduction system of her heart. He explained that what normally makes your heart beat is a regular impulse from the auricles, the two heart chambers that receive blood from your veins, to the ventricles, the lower chambers from which blood is pumped out. When this impulse is interrupted, the ventricles usually set up their own beat, perhaps forty to fifty times per minute, just fast enough to keep a child alive.
Lisa's heart rate stayed below forty beats per minute, and once it dropped to fifteen. She was growing weaker and more uncomfortable every day, but JDr. Parker thought she had a chance of living with the help of a
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It was a gamble—the first time a pacer was used for a baby
We had never heard of these instruments but he told us that in the fifteen years since they were first developed they have often been used for older people with hearts damaged by coronary disease. As far as the doctors knew, no one in the world had successfully fitted a pacer for a new-born child, but he thought it was worth try-
ing in Lisa’s case. He telephoned the Hospital for Sick Children in Toronto, where he had done postgraduate work, and talked to Dr. Michael Braudo, a pediatrician who takes a special interest in heart disease. The doctors in Toronto agreed to try the device on Lisa.
Since I had just come out of hos-
pital, a doctor from Charlottetown offered to accompany Frank on the flight to Toronto when Lisa was nine days old. At first, Dr. Braudo kept her under observation, with her heart connected to an electronic monitor that showed every heat on an oscilloscope, in the faint hope that she might improve. Day by day her pallor, sweat-
ing and restlessness increased until she thrashed around in her crib screaming with pain because her heart couldn’t pump enough blood to nourish itself. She was like an adult suffering angina pectoris. When Dr. Braudo telephoned to Georgetown to say they had decided to operate, he told us not to expect too much.
When Lisa was fifteen days old, Dr. George A. Trusler inserted temporary pacer wires directly into her heart, and four weeks later he sewed the tips of two permanent wires under the surface of her heart muscle. Dr. Braudo told us that pacers for adults are usually buried right inside the abdomen or armpit, but Lisa’s little body didn't have room for an electrical unit as big as your fist, so Dr. Trusler attached the wires to an external pacer. This had a second advantage: the batteries could be
changed without removing the wires from her heart.
In the middle of May. they told us we could bring Lisa home at last. As Frank and I walked into that enormous hospital it came to me with a shock that I might not recognize my own daughter. After all, she hadn't been in my arms since she was a few days old. It was strange, too, to meet Dr. Braudo for the first time after we had talked so often by telephone. He and Dr. Trusler explained how we must watch for infection around the wires of the pacer, and how the wires might pull out as Lisa grew more active. Beside our tiny baby the pacer looked huge, and when I saw those wires coming right out of her heart and realized that if they pulled loose her heart could stop beating, I was terrified.
Smiles at 84 beats
In spite of my fears we got along famously last summer. Dr. Parker gave me a stethoscope and taught me how to check her response to the pacer, which was set at eighty-four beats per minute. Lisa wears a bandage where the wires enter her body, and she learned to help me by putting her hands behind her head when I changed the dressing. My mother made shirts with a little round inside pocket for the pacer so that the wires could be tucked in under ordinary baby clothes. Lisa used to sit in her carriage in the sunshine while our two boys played on the beach just a hundred yards from our white bungalow, and she was so happy and healthy that she smiled whenever you looked her way. By fall she was so strong that she could pull herself up by the back of the couch and stand there triumphantly, her face rosy and her blue eyes wide. Wade and Scott were so proud of her that they let her use toys they wouldn't lend each other.
Then, in December, I noticed that she wasn't quite herself. She lost some of her cheerfulness and good appetite, though she sat up in her high chair with us at Christmas dinner. One night, four days after Christmas, as I changed her bandage, I saw with horror that one wire was pulling loose from her chest. Within moments she was sweating and turning so pale that the skin around her nose and mouth looked almost green. As I held her in
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my arms, 1 could feel her heart dropping fast. It was the most frightening moment of my life. But Frank reminded me that Lisa could get along without the pacer for a surprisingly long time—the doctors at the Hospital for Sick Children had tried taking her off it at intervals. He called Dr. Parker, who reassured us that she would he all right until we could get her to his office the next morning. Once she was there, he examined her quickly and then asked us, “Will you fly to Toronto with her this afternoon?”
Of course we agreed, and he telephoned the Hospital Service Commission to ask if the RCA F search-andrescue plane from Halifax could pick us up at the airport in Charlottetown. Since we hadn't brought overnight supplies, even for Lisa, Frank bought disposable diapers and then took us to the hospital where nurses made a batch of formula and packed extra bottles for our trip. At ten to six we climbed into the little twin-engine seaplane and spent the next six hours flying west against headwinds so strong that we had to land at Ottawa for extra fuel. It was nearly midnight when we reached Downsview Airport, on the outskirts of Toronto, where a doctor from the Hospital for Sick Children waited with an ambulance.
Nightmare: pacer failed
That night. Dr. Langford Kidd connected a temporary pacer, and five days later Dr. Trusler attached a new pacer with two fresh electrodes on Lisa's heart. When she came home late in January she seemed pale and solemn, too weak to stand up in the walker she’d used before Christmas. And less than two weeks later the new pacer stopped working properly and the whole nightmare was repeated: the fading heart beat, the little RCAF aircraft, the wail of the siren as we raced to the Hospital for Sick Children. Once, as tne ambulance shrieked through an intersection, a car came sailing through and we collided with a sickening crash. The woman driving the other car got out, looking white, but luckily no one was even shaken up and we weren't held up more than five minutes.
After we left Lisa in hospital and went home to Georgetown, Dr. Parker asked Frank if he could get a job in Toronto. We knew that he was right. For Lisa’s sake, we'd have to leave the island. It was too risky to go on living a thousand miles from the Hospital for Sick Children. Though everyone had helped to make things easy for us, and my sister looked after our boys when we had to make sudden trips, Frank and I were feeling the tension—so much so that we'd both started smoking again after giving it up six years before. Watching Lisa's pacer and changing her bandages is easy enough, but when her heart drops suddenly it's almost more than we can take.
As well as being worried about Lisa, we were concerned about expenses. Keeping our daughter alive has cost us about $2.500 if you count
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SECOND HEART continued
Can Lisa learn to live in time with her own slow heart?
Frank’s time off work—more than a month’s wages at about $75 a week. We’ve paid what we can and borrowed $500 from the bank to cover the rest. The RCAF emergency flights were free, and our medical expenses have been covered by Frank’s insurance since April 1, 1965. The Rehabilitation Council of Prince Edward
Island, a voluntary organization, paid air fare for the doctor who took Lisa to Toronto that first time, and paid my fare twice. But each time we brought her here we had to fly home and then come back weeks later to fetch her, so Frank and I have paid the return fare of $108 (economy) several times. We spent $90 on long-
distance calls the first two months Lisa was in hospital, and even bandages cost about five dollars a week.
Though Toronto wasn’t altogether strange to us—we’d both worked here for a year and a half before we were married, and two of my brothers live here—we were pretty disheartened by the idea of leaving our house in
Georgetown and moving to a city apartment. But once we had settled in Toronto, we could bring Lisa home, wearing a new pacer—a bigger, rectangular model too cumbersome to fit under a shirt. The doctors told us that they used this kind because, unlike the little round ones, it can be adjusted to various frequencies and voltages. They’ve set it at seventy-two beats per minute, twelve beats slower than the earlier pacers, in the hope that Lisa’s heart will gradually get used to a slower rate.
The night Lisa came home we realized just how much she depends on this artificial stimulation, and how much we owe to the pacer. She was too restless to sleep, and she cried so uncomfortably that Frank decided to increase the strength of the current to her heart. He adjusted the pacer as the doctors had shown him, and within a few moments Lisa was smiling and ready to fall asleep.
Less than a week later infection developed under one of Lisa's incisions, and she had to go back into hospital for a few days to get it under control. Though Dr. Braudo told us this problem wasn’t serious, we were thankful to be close to the hospital. The pacer she's wearing now needs quite a lot of attention, but the doctors hope it will carry her for a few months until smaller and more reliable types are developed. One kind they’ve mentioned is an apparatus without wires. It’s worn on the chest and stimulates the heart beat by sending radio waves through the skin to a receiver on the heart. Another kind is a miniature pacer, small enough to be implanted in a child’s body. These and other new pacers are still in the experimental stage, and by the time they’re ready there’s even a small chance that Lisa will be able to live without a pacer — Dr. Trusler hopes that she will eventually adjust to her own slow heart rate and perhaps speed it up through exercise. When he operated in January, he told me that Lisa would be able to run and play like other children. There’ll be some hard times yet, but we’re lucky to have those doctors—and our daughter. As Dr. Braudo says, “When this kid smiles, she really gets you.” ★
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