By Janet Layne Kilpatrick
December 24, 1990 12:00 PM

Last July, Layne and Janet Kilpatrick of Lompoc, Calif., were brimming with anticipation as they awaited the birth of their second child. They had been through two hard years, including the death of Janet’s grandmother and a series of medical problems involving other members of their families. In March, Layne, 31, a pharmacist, had undergone open-heart surgery to correct a heart arrhythmia. Still thin from his ordeal, Layne was back at work on the night of July 26 when Janet went into labor. “I was excited,” says Janet, 30, a dietitian. “I thought our difficulties were over.”

But they were not. Instead, the most harrowing—and heroic-drama of their lives was about to begin. On the morning of July 27, 7-lb.,½-oz. Weston Wells Kilpatrick was delivered by cesarean section at Valley Community Hospital in Santa Maria. Almost immediately it was apparent that all was not well with the newborn. A few days later, doctors at the famed Loma Linda University Medical Center near San Bernardino confirmed that little Weston had been born with Shone’s complex, a variation of hypoplastic left-heart syndrome, in which the left ventricle of the heart is severely underdeveloped, like a deflated balloon. The condition, which occurs in one or two of every 10,000 infants, is fatal without a heart transplant or a surgical repair that thus far has had slim success. With Weston there were further complications: The child had serious aortic and valve defects, and there were holes between his heart’s right and left chambers. “Weston ‘s heart,” explains Loma Linda’s Dr. Steven Gundry, “was like an eight-lane freeway with four lanes closed, two breaks in the metal divider, and several on and off ramps that were blocked to traffic.”

As the family awaited a donor, an extraordinary, unseen process was beginning: Weston’s left ventricle, or pumping chamber, was beginning to mend itself. Even though intricate surgery was needed to correct the heart’s other problems, his doctors do not hesitate to call Weston’s experience a miracle. As Christmas approached, the Kilpatricks told their story to correspondent Dan Knapp:

Janet: Before Weston’s birth, I was hoping for easier times. I felt we’d paid our dues. We’d been married six years, and I’d supported Layne through the University of Utah until he got his pharmacy degree. He’d worked hard to get himself established with a drugstore chain, and we were now living in a nice house we’d bought in Lompoc. I knew I’d have to have another cesarean, as I’d had with Danielle, our 4-year-old daughter. But I wasn’t bothered—I was excited.

Layne: After she delivered Weston, we were both really happy to have a son. Then the problems started. I was in Janet’s room calling friends and family when her mom, Jakie, came in and said, “You’d better come to the nursery. They’re taking X rays of Weston, and there are a lot of people around him.”

Our pediatrician said Weston was having trouble breathing. He was in an oxygen hood, and I could hear him grunting when he exhaled. We’d been told after his birth that he had a heart murmur, but that it could be normal and might disappear without medical intervention.

Janet: Even in my foggy state in the recovery room, I could tell Weston was wheezing when he breathed. Then they whisked him away. I was a bit scared, but I thought, let’s wait and see. Then our pediatrician came in and told me Weston could have one of three different problems. Later it turned out he had all three, and his case was too complicated to be handled locally. Our doctor recommended Weston be sent to a hospital in Santa Barbara, where they had a big neonatal intensive-care unit. I was still pretty much out of it, but that’s when I started to really get scared.

Layne: By now I had to light to control my emotions. I knew I had to be strong for Janet, but I broke down and cried in her room while I was on the phone telling her parents to come back to the hospital and stay with her. Before Weston was taken to Santa Barbara about 6 P.M., a nurse wheeled him into Janet’s room in his Isolette. She touched his hand, looked at him, and, even sedated, she had tears in her eyes. I kissed Janet goodbye, feeling terribly torn between staying with her and accompanying the baby. But I went.

At the neonatal unit in Santa Barbara, a specialist told Layne that the left side of his son’s heart was about one-quarter the size of the right side, hopelessly too small to sustain life. Weston’s condition was not correctable with simple surgery, and he might die if his heart were not replaced. He would have to be sent to Huntington Memorial Hospital in Pasadena for more specialized care and evaluation.

Layne: I was numb. I couldn’t go in and see my son. I was afraid of getting any closer to him emotionally because he might be snatched away from me, and then it would be even harder. And how was I going to tell Janet—on the phone, when I couldn’t hold her through all of this?

Janet: Layne was trying to protect me, but I never gave him the chance. By 9 o’clock that night I was frantic with worry, so I called the Santa Barbara hospital and had someone bring Layne to the phone.

Layne: I wasn’t prepared for that. I asked her if there was anyone with her, and when she said no, I begged her to call the nurse. But she kept pressing.

Janet: “What’s the matter?” I asked him. “Is he going to die?” Layne said no, but when he told me what the doctor had said, that Weston might die. I broke down completely. I was sick to my stomach. I was sobbing when two nurses came rushing in to comfort me. I was nearly delirious with pain and fatigue. I felt really cheated. All this for nothing, all the difficulty just to have the baby ripped away from me. I could see all the other babies being wheeled to their mothers in the hallway. They had to be wrong about Weston—I was sure of it. Finally, I said, “I’m coming down to Pasadena.”

Layne: “But you’ve just had major surgery!” I said. “You can’t be traveling. The doctor won’t let you.”

Janet: “Then I’ll leave against medical advice,” I told him.

Layne: Janet has a strong will, so I knew there’d be no stopping her. The next morning, she got the doctors to release her and admit her to Huntington Memorial in Pasadena so she could be near Weston. On the way there, her parents drove her to our home in Lompoc.

Janet: I wanted to pick up some clothes. It was about 10 A.M. and we were driving about 75 mph, going through red lights, when we were stopped by military police. The road home went right through Vandenberg Air Force Base. When they heard why we were speeding, they gave us a siren escort to the house at 85 mph.

I was in a lot of pain, but I didn’t care. Compared to what Weston was going through, what was a bit of postnatal pain? They were keeping him alive on life support, giving him a drug called prostaglandin to keep a duct open that usually closes after birth so his heart could pump blood to his whole body.

Layne: We were at Huntington Memorial for four days. Before Janet got there, I was somewhat encouraged by the prospect of a transplant. But my hopes were smashed when the specialist said he thought Weston would not qualify as a transplant candidate. An abnormality he’d discovered in Weston’s aortic arch ruled that out. “I’m awfully sorry,” he told me, “but this is the way it is.”

I went to the chapel and wept. I prayed that we could handle Weston’s death. But then something happened that I hadn’t dreamed was possible. Before Janet arrived at the hospital, the doctor came to tell me he was wrong, that doctors at Loma Linda Medical Center could handle the aorta problem and that Weston was a transplant candidate.

Janet: They released me from Huntington Memorial in a couple of days, so I stayed in Layne’s parents’ camper out in the parking lot to be near my son and to provide breast milk for him. I wanted to be able to follow Weston to Loma Linda.

Layne: The helicopter that was going to transport him had everything he needed—an Isolette, oxygen, monitoring equipment, drugs, even little defibrillating paddles just in case.

Janet: We went up to the helicopter pad to see him off before driving to Loma Linda ourselves. It was early in the afternoon of a beautiful and hopeful day. But I knew that life-support systems sometimes fail, that hearts sometimes stop and can’t be restarted, that helicopters sometimes crash. And as I looked around at the beautiful blue sky, at the mountains, trees and homes, I wondered if Weston would ever get the chance to see any of it. Layne and I were both crying as the helicopter took off.

During the next two weeks at Loma Linda, Weston was supported with prostaglandin while he waited for a heart transplant. But it could take weeks or even months for a suitable heart to become available. Still, the Kilpatricks were confident their son was in good hands. The surgeons who would operate on Weston were infant-heart-transplant pioneers, Gundry and Dr. Leonard Bailey. Bailey had performed the famous Baby Fae transplant in 1984, when the heart of a baboon was placed in the chest of a 12-day-old infant girl. The doctors had performed more than 80 transplants, with an encouraging 75 percent survival rate.

In Weston’s case, the doctors were concerned because of the difficulty of locating infant heart donors. “Weston was literally running on one cylinder,” says Gundry. Not only was his left ventricle severely underdeveloped, but the baby’s malfunctioning valves, the holes between his heart’s chambers and his defective aorta, all prevented adequate amounts of oxygen-rich blood from getting to his body.

Layne: We were thankful he had come to Loma Linda, but then we began to experience the awful merry-go-round of hope, then disappointment and fear, that parents awaiting a transplant go through. We didn’t get to see Dr. Bailey or Dr. Gundry for about two weeks, but we knew they were busy and that a donor had not yet materialized.

Janet: During this period, we had to sell our house in Lompoc, which we’d bought only six months before. One of the requirements at Loma Linda is that parents be within 30 minutes of the hospital in case of an emergency. We couldn’t carry a mortgage and pay rent for another house too. We completed the sale in a week at about a $15,000 loss. So I had to go back and pack up the house. Layne’s chain of pharmacies required him to do fill-in work as a pharmacist everywhere from Palm Springs to Pasadena. For about a month Layne, Danielle and I would stay with different members of our family and church, living out of suitcases. Finally, we found a house we could afford to rent.

Layne: Before we had gone to Loma Linda, doctors had given us three choices: Let Weston die; do palliative surgery—something called the Norwood procedure—where one side of the heart ends up functioning like two; or wait for a donor and do a transplant. There was never any question about just letting him die.

We were told that with the Norwood procedure only one in five kids sees a fifth birthday. That gives you time to bond with your child before he’s torn away from you, and we didn’t want that. So we had to take the twin gamble that Weston would survive long enough on his own for us to find a donor and that a transplant would be successful. Then, just a few days later, we got the first of two very bad scares.

Janet: By now, watching Weston use all his energy just to stay alive had become a living hell. He was bruised and had needle marks all over him. I thought, what kind of God would let a child suffer like this? It was like a death sentence had been passed on Weston, but they wouldn’t go through with the execution.

At least they were now allowing me to hold him. On Aug. 15, I was doing just that when suddenly he stopped breathing. I thought he had died right then and there. I felt like someone had emptied everything out of my chest and stomach. But I held him while they used a manual resuscitator on him for a minute. Then they took him to his bed and worked on him some more. Finally, they got him breathing normally again. He’d only been without oxygen for about 30 seconds, so there was no possibility that he’d suffered any lasting damage. But it stunned me, and it was more of a struggle for him after that—until the next episode.

Layne: The respiratory arrest made me see the urgency of finding a donor quickly. I did everything possible to help increase donor awareness. I made calls, contacted the press. Back when infant heart transplants were new, there were plenty of hearts to go around. Now that it’s being done all over the country, all the time, the opposite is true. People need to know this. Unfortunately, there’s no group to inform potential donors. There are lots of babies born brain dead, for example, who would be perfect donors. But parents just don’t know about the need. Organ procurement agencies will tell you that’s their job. But in our case it just wasn’t happening, and we didn’t know how long Weston could wait. The outside number at the time for keeping an infant like him alive was about three months.

Janet: We’d been at Loma Linda almost two months, and still there was no donor. But Weston was holding his own, even showing some slight improvement. Then on the night of Sept. 28, we spent the best time we’d had so far with him. My daughter even held him in her arms for the first time. We were there about an hour, then I left Layne to take Danielle home. After I left, I had no idea Layne was frantically trying to reach me at home and that something terrible had happened.

Layne: I was still there, at the foot of his bed, when he let out a violent cry like someone had just stabbed him in the heart. At the end of that single cry, he didn’t take another breath. “He’s stopped breathing!” I shouted to a nurse. She took one look and said, “We need to bag him!” That meant they had to apply a handheld resuscitator. I stood there helplessly, watching him turn a deep purple.

Janet: When Layne finally reached me, I rushed back to the hospital. Weston had had a full code-blue cardiac arrest for 30 minutes. He’d flatlined on the monitor. Somehow they had brought him back, but I was devastated. I was sure he was going to die. There were bruises where they’d pressed down on him with two fingers to administer CPR. There were burn marks on his little chest where they’d finally applied the electric paddles.

But after tests they found out that he hadn’t suffered any damage to the brain or any other organs, thanks to the CPR done by the neonatology staff. That’s when I started accepting everything that happened. I began to believe there was a reason for all we were going through.

Layne: You might call his surviving a code-blue a miracle. And we were about to get another one.

Janet: They kept testing him. Finally they asked us to come to the hospital one evening. I was scared stiff about what they would tell us. But the doctors said that somehow Weston’s left ventricle had developed to near normal size and was functioning almost normally. It looked pretty certain he would not need a transplant after all. I wanted to jump up and down, run around and kiss the doctors. I cried for joy and thanked God. No other baby with this degree of hypoplastic left-heart syndrome, as far as our doctors knew, had ever had this happen.

“It’s a bit of a miracle,” Gundry now says, and Bailey adds, “This was a natural miracle based on the sort of modem neonatal therapy that has extended the unnatural history of the infant long enough so that something like this could happen. “Dr. Jorge McCormack, Weston’s cardiologist, further explains, “Ironically, if a heart had been available, we would have done a transplant, and Weston’s heart never would have had the chance to grow. Also, the other defects prompted a backwash of blood to the left ventricle and helped it grow.”

Janet: Even though the news was wonderful, Weston wasn’t out of danger yet. On Oct. 5, Dr. Gundry performed surgery on his aortic arch. Again, we were on pins and needles. But he came through with flying colors.

Layne: Twelve days later, we got to take Weston home. I felt like a chunk of agonizing time had been removed from our lives.

Despite their overwhelming sense of relief, the Kilpatricks’ ordeal continued. On Oct. 25, Janet was rushed to the Loma Linda emergency room with complications from a stress-induced bleeding ulcer. She was treated and released the same day, with the prognosis that her ulcer would eventually heal. Then, on Oct. 29, Weston was readmitted to the hospital to monitor serious digestive problems and threshold signs of congestive heart failure.

Layne: He’d only been home a little more than a week and a half. At the hospital, I was standing by his crib with my hands on the railing, and the fear just overwhelmed me. I put my chin on my hands, looked at him, and the tears just started to flow down my cheeks.

Although Weston no longer required a transplant, his heart needed surgical repair work. On Nov. 9, after inspecting the baby’s heart with a pressure meter attached to a catheter, Gundry performed the four-hour operation. His main repairs were rebuilding Weston’s mitral valve and patching the troublesome hole between the right and left ventricles.

Janet: My heart was pitter-pattering as I waited for Dr. Gundry to come out of surgery. Finally, he came into the hallway with a big grin on his face. “Everything went great!” he told us. I jumped up and shouted, “I knew it!”

Layne: The doctors expected that Weston would need a few weeks to recuperate under an oxygen hood and more weeks at home on limited life support equipment. But Weston recovered so fast he was home in six days.

“He’s simply amazing, “says Gundry. “He’s as happy as a clam. He’s eating well, his mitral valve is now normal, and his chest X rays are the prettiest they’ve ever looked. I think for all purposes, he’s fixed, as good as new, and shouldn’t have any problems. If I were Lee lacocca, I’d be happy to give Weston a million-mile warranty. I think the ordeal is over.”

Layne: I have never had anything to be more thankful for than this. We never expected Weston would be sent home without a single defect in his heart. We were blessed, but hundreds of other babies die every week because they need transplants and there are no donors. I pray that our experience will remind people of how desperately other infants need hearts.

We and Weston still have hurdles ahead, medical as well as financial. Our insurance has covered all but $2,500 of our medical bills, but we’ve been set back about $20,000 from having to sell our house and move closer to Loma Linda. Still, just to see him every day is worth everything we’ve been through.

Janet: I can’t tell you how happy this has made me. It feels like we’ve brought Weston home for the first time, like he’s been born again with everything perfect. I’m learning that I don’t have to be so nervous about him anymore. I can let him cry if he needs to, without thinking it could be the end of the world.

This has taught us patience and brought the real priorities home to us. Like most Americans, I wanted a home, a nice car, all those things. But I’d give them up just to keep Weston. This, I can tell you, will be a Christmas to remember.