Jennifer’s Heart

Times photographer Lori Shepler was introduced to Jennifer O’Neill and her family in June 1997. Shepler had been interested in following a person who needed a heart transplant, and Caron Burch, transplant coordinator at UCLA Medical Center, chose Jennifer, 11, because of all she had been through, her courage and her spirit.

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Oct. 10, 1997.

Just another day for the O’Neill family in Pico Rivera.

At 6:30 a.m., the school bus came and picked up 11-year-old Jennifer, a fourth-grader at Kaiser Elementary School in Costa Mesa.

Louise O’Neill was getting her other daughter, Stephanie, 9, ready for school when the phone rang around 7:30. It was Caron Burch, pediatric heart transplant coordinator at UCLA Medical Center. She was calling to say that a heart might be available for Jennifer and to be ready.

Not quite believing what she had just heard, Louise handed the phone to her husband, Bill. Weeks before they had been told that Jennifer, who had been plagued with heart problems since birth, might not be eligible for a transplant. Because her pulmonary arteries were so small, doctors feared a new heart might not be able to function properly.

Louise and Bill said a prayer for the family of the child who had just died and was giving their daughter a chance at a new life.

While Louise packed a suitcase for Jennifer--not forgetting Madeline, Jennifer’s favorite doll--Bill rushed to Costa Mesa to pick up his daughter from school.

During the drive, Bill wondered how he was going to break the news to Jennifer--that she would be getting a new heart at last. Even though Bill and Louise were in the process of divorcing, together they had tried to mentally prepare for the surgery. Now, the reality was here and Bill was nervous.

He walked into her classroom and simply said, “Jen, they have your new heart for you. We have to go to the hospital.”

“No, I don’t want to go now,” Jennifer said. “I have to finish my schoolwork.”

Her face was filled with fear. Bill gently moved her books aside and reminded her that a new heart would help her run and play sports.

She gathered her books around her and started working again. Then he said, “Jen, it will make you grow bigger and Stephanie will have to look up to you when she talks.” Although she’s the older of the two, Jennifer’s weakened heart didn’t allow her to grow normally, making her dramatically smaller than her sister.

At that, she broke into a smile. She got up from her desk, grabbed her father’s hand and said, “Let’s go.”

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Jennifer Laura O’Neill was born at Canyon General Hospital in Anaheim on May 22, 1986. The birth was normal, but as Louise held her daughter shortly afterward, a nurse became concerned about Jennifer’s coloring.

That afternoon it was confirmed that Jennifer had a heart problem. The following day the problem was diagnosed as pulmonary atresia; her right ventricle was underdeveloped and her pulmonary arteries were abnormally small. She wasn’t getting enough blood to her lungs. Jennifer’s condition, while not rare, is among the more uncommon types of congenital heart disease. Something had to be done quickly or Jennifer would not make it through the week.

She was immediately transferred to Kaiser Permanente-Sunset. Bill and Louise could only pray.

On Jennifer’s third day of life, doctors decided to operate. They opened her tiny body and tried to correct the problem with her valves. The surgery went well and her heart seemed to be working more efficiently.

Bill remembers how Jennifer looked in the nursery. “A little peanut laying there.”

Louise remembers looking out the window and seeing hundreds of people on Sunset Boulevard holding hands as part of the Hands Across America project. Bill and Louise each stuck a hand into the portholes of the incubator and Jen squeezed their fingers. The couple joined hands and the circle was complete. They prayed for their own Hands Across Jennifer.

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Most of 1986 was spent in and out of the hospital. The surgery hadn’t corrected all of Jennifer’s problems.

At 8 months, Jennifer had surgery to improve her cardiac output. Her heart was not pumping enough blood. Once again her condition was deteriorating. But hours after surgery, her oxygen level began to drop. The O’Neills were told that Jennifer--who was on massive life-saving medication--was barely holding on.

“She is on the brink of death but she won’t budge,” a doctor told Bill.

A few hours after surgery, doctors said they would have to go back in--her second surgery in 12 hours--because Jennifer was not responding.

“Your little girl is fighting for her life and I’m not going to lose her without giving it a good try,” one doctor said.

Bill asked, “What are the odds?”

The doctor replied, “There are no odds. All we have left is prayer.”

In the waiting room, Bill and Louise joined hands and prayed with family

and friends. Evidently their prayers were answered because as Jennifer was being wheeled to the OR her heart rhythm improved, so surgery was canceled.

But over the next week she went into kidney and liver failure, and she turned black and blue from all the poisons in her body. She was just 8 months old and was being aggressively treated with megadoses of medication.

Bill asked doctors what the side effects of the medication would be. They told him he shouldn’t be concerned with that. They were keeping her alive.

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Before the last surgery, Jennifer had been an energetic and responsive baby. She would rock to the beat of music. She was cheerful and happy.

Then sometime after the surgery, her parents noticed that she wasn’t responding to their words or to any music.

Jennifer underwent a battery of tests and it was determined that she had lost her hearing. The life-saving medications were to blame. It was another setback, but the O’Neills--who had been through so much with their daughter--felt this was something they could manage.

And in fact, today, Jennifer--whose hearing loss is considered severe to profound--can articulate, does not use sign language and has excellent lip-reading skills.

But her heart was another story.

She was operated on again when she was 1 1/2 and had another open heart surgery at 2 1/2. This time they wanted to try something different to improve the blood flow to her lungs. They used a valve from a cadaver to replace her defective pulmonary valve. After they closed her, she started bleeding and was in major heart failure. She was shocked with a defibrillator 21 times. Surgeons went back in to stop the bleeding.

“She was tough as nails. She came through,” her dad said.

Over the next 8 1/2 years, Jennifer had three pacemakers installed and countless angiograms to monitor her heart, which was progressively deteriorating.

When she was 9 1/2, she started having more arrhythmia, and her parents noticed that she tired easily. Some days there would be a bluish tint around her lips.

All signs indicated that she was in constant heart failure.

Her parents met with doctors. They knew that a heart transplant was not a guarantee, but when one doctor told them that Jennifer had possibly 18 months to live, they felt they had no choice.

Jennifer was referred to UCLA Medical Center, where she was evaluated and accepted. She was put on the transplant list in July 1997.

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Oct. 10, 1997.

With Jennifer and Stephanie at his side in the front seat, Bill O’Neill headed to UCLA. He tried to hold back the tears.

Sensing her dad’s fear, Jennifer comforted her father. “Dad, it’s OK.”

Bill and the girls arrived at UCLA Medical Center around 10 a.m. Relatives began arriving shortly thereafter. Jennifer’s spirits were high. Nurses periodically administered pre-op medication.

Jennifer’s main concern was that she was going to miss her cousin’s birthday party that afternoon.

As an IV was being inserted into her arm, her Grandmother Benny--Bill’s mother--read a spiritual message: “What the heart gives away is never gone. It is kept in the hearts of others.”

Then the heart surgeon, Dr. Hillel Laks, entered the room. He asked his young patient if she had any questions. She wondered what he would do with her old heart. He told her it would be studied in order to help others.

Later, in the hallway, Laks spoke to Bill and Louise. Bill told Laks that whatever happened, the surgical team shouldn’t give up “because Jen is a fighter.”

“We’ll take good care of her,” Laks replied.

The family gathered in Jennifer’s room and held hands while Louise said a prayer aloud. Jennifer watched curiously and joined in as they all recited “The Lord’s Prayer.”

As Jennifer was being taken to the operating room, her relatives asked for one long hug that would last them a week or so. Jen gladly complied and smiled as she held them.

But as they headed for the elevators to the basement surgery level, Jennifer said, “I’m scared.”

“I know it’s a scary thing,” her dad said, “but you’ll feel much better afterwards. You will be able to run.”

Outside the operating room, doctors explained to Jennifer that she would be given a mask for oxygen, that she would get some medicine and she would feel real silly. Then she would go to sleep.

Louise faced the entrance to the operating room and held her hands in prayer and silently blessed the room.

Bill held Jennifer’s hand. One of her fingers had a small ring with a red heart on it. He gave her one last hug and said, “You can dream of the angels now.”

With her Madeline doll at her side, Jennifer was taken into the operating room.

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Because Jennifer had had so many surgeries and so many adhesions, doctors had to go slowly with the opening of her chest. It took about two hours just to expose her heart. It was much larger than a healthy heart for a child her age.

As Beethoven played on a CD player, Laks isolated her major arteries and veins to prepare for removal of her heart. He waited until he knew the donor heart, which was arriving by helicopter, was safe in the building. Jennifer was then put on bypass to the heart-lung machine.

The machine oxygenated and cooled her blood so her metabolism would slow. Her body was now functioning completely on this machine.

Laks removed Jennifer’s heart from her body and held it in his hands. He placed it in a stainless steel pan. It was immediately taken away for study. For seven minutes she had no heart inside her body.

A medical assistant then removed a glass container holding the new heart from a large blue ice chest, which was emblazoned with a simple (Heart) . He waited for Laks’ instructions.

Laks was ready for the new heart. The scrub nurse, Donna Flynn, removed a plastic bag from the container and cut it open. Inside the bag was a small healthy heart. She lifted it out of the bag and handed it to Laks. He held it with both hands and, after inspecting all the chambers and valves, remarked, “This is a beautiful heart.”

The 10-hour surgery connected the new heart to Jennifer’s arteries. As blood reentered the heart, it slowly began to beat.

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Jennifer awoke four hours after being removed from the operating room. Her first words to her mom were, “I was brave.” She wanted to know where her sister was.

Jennifer had a 6-inch opening in the center of her chest, a large tube in her chest area to drain fluids, two IVs in her tiny arm, a catheter in her neck and two more at the top of her legs.

But in the months to come, Jennifer would be able to run and play like other children. Without causing her parents concern, she would be able to do one of her favorite things: swing. High in the air on a swing, Jennifer would get lost in a dream world. She would laugh at her parents’ concern when she would swing higher and higher.

Her parents now will no longer have to fret over her other games. Louise remembers the time she worried when Jennifer came home from school and announced, “Hey, Mom, my heart was going fast today.” Louise asked what happened, and Jennifer said, “I did 62 jump ropes for my friends.”

Indeed, the chances are good that there will be even more jump-roping and swinging in Jennifer’s future.

Laks said that survival in the first year for children with Jennifer’s condition is 92%. On anti-rejection medications, children who have undergone transplants can grow and develop normally.

In fact, on her second day in the ICU she wanted to go to the cafeteria for some food. She was in the ICU for three days before being moved to a private room.

Her only setback came on the third day when fluid accumulated in her chest cavity, creating the possibility that it would need to be drained. But it was reabsorbed with medication.

At one point that night, Jennifer had to go to the bathroom and decided to ring the nurses with her call button. They didn’t respond as quickly as Jennifer wanted so she unhooked the monitoring devices from her body and walked slowly to the bathroom while she wheeled her IV hookup. Of course, this set off all the alarms at the nurses station. Before Jennifer could make it to the bathroom, four nurses were in the room ready for the emergency they assumed they had. She thought they had gone home for the night.

On Oct. 19, nine days after surgery, Jennifer was released to the Tiverton House, a nearby facility for families and recuperating patients. That day, the transplant coordinator, Caron Burch, and Louise O’Neill went over everything the family needed to know about Jennifer’s care--such as warning signs of heart rejection, proper cleaning of her IV, the administering of medication, and other general advice.

Jennifer would have to take nine medicines in the morning, one in the afternoon, and seven before bed for the next year. After that first year, she would need to take only two pills a day for the rest of her life. Jennifer patiently chewed bubble gum in her new dress and shoes as she sat on her dad’s lap during the three-hour teaching session.

Two weeks after surgery--and after a five-day stay at Tiverton House--Jennifer went home.

As her family drove to Pico Rivera, Jennifer was in high spirits. She told Stephanie that she was happy she got her new heart and that she would get to run and play sports. (While her short-term goals are to play basketball and be a cheerleader, someday Jennifer would like to teach deaf children like her mom does at the John Tracy Clinic at USC.)

As they neared the house, Jennifer saw the surprise.

Her relatives were waiting with presents and a big banner strung across the garage, festooned with balloons, accompanied by a large drawing of a heart.

Jennifer, who was wearing a surgical mask, jumped out of the car and hugged everyone--except for Grandma Mary, who was nursing a cold. Jennifer quickly went into the house, clutching a bouquet. She was finally home.

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Postscript: A week later, Jennifer was eating takeout from her favorite Thai restaurant when she opened a fortune cookie. It read: “Beauty is in your heart. Let it out. Let it beat. Give yourself a treat.”

Jennifer blurted, “An angel came and put it in there!”

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Lori Shepler, 38, has been a staff photographer at The Times since 1983. She can be reached at Lori.Shepler@latimes.com

* HEART MONTH

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