Four stories of the heart

Four stories of the heart

At Children’s National Medical Center, patients and parents do what they can to make it to tomorrow

Four stories of the heart

At Children’s National Medical Center, patients and parents do what they can to make it to tomorrow

Published on October 5, 2015

In Room M366, Aida Wiebke weaves her arm through a tangle of electrical wires and fluid tubes so she can hold her 5-month-old son Teddy, feeling the warmth of his shoulder blades in the palm of her hand. For hours she gently, ever so gently, rocks him and — with her lips to his ear — talks to him about everything and nothing at all.

Teddy was born with the left side of his heart and aorta too small to function. He has had two surgeries, one a few days after he was born, the second at 4 months. Usually a third surgery at 2 years successfully treats the condition, but so far Teddy has failed to thrive, and doctors fear for his life. Now he is on the heart transplant list.

(Illustrations by Richard Johnson)

(Click to enlarge) (Illustrations by Richard Johnson)

Nearby, in Room M364 of the CICU — the Cardiac Intensive Care Unit at Children’s National Medical Center — the lights are out, curtains drawn. Jeremy Eppler is playing the guitar for his infant son Michael. Michael was born with a hole in the middle of his heart and other complications.

Wearing nothing but bandages, tape, wires and tubes, 3-month-old Michael is recovering from open heart surgery, the second part of a three-stage operation similar to Teddy’s. Jeremy and his wife, Indira, both play guitar at church — it’s one of the ways they pray, and having music in his room lets Michael know his parents are with him. Now Jeremy plays by ear through a catalogue of Dave Matthews, Led Zeppelin and Pearl Jam, one song flowing seamlessly into the next, adding harmonies and slowing the beat and rhythm so that the original source song is but a vague, beautiful memory. His eyes never leave his boy’s vital-signs monitors.

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In Room M369, Hydeia Hart, a lanky, red-dreadlocked 18-year-old who has been in the hospital 16 times in the past decade, has been admitted with signs of heart failure. All her life she has lived with idiopathic pulmonary hypertension, with high pressure in the vessels that carry blood to her lungs causing heart strain.

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Hydeia downs a mouthful of pills with the aid of a milkshake. She smiles under the oxygen mask that covers her nose as relatives around the bed momentarily laugh and applaud her small victory, then she vomits everything onto the bedclothes. “I want to go home,” she says, barely conscious during the cleanup. “Why do I even have to be here?” she mumbles from almost-sleep. Her mom and aunts stand by at the end of the bed, unable to answer.

In Room M365, 8-month-old Abigail Moore is wrapped in a blanket, two small feet with striped pink socks sticking out. She breathes fast through the tangle of tubes in her nostrils, her eyes moving beneath her eyelids in sleep. A children’s TV program squeals for attention but she sleeps on, with one small arm over a pink elephant and the other over a pink doll with a big heart on its chest. Only when her mother, Alejandra, sings quietly to her from the chair beside the bed do her eyes snap open for a second. Then she is deep asleep again.

Abigail has an atrioventricular canal defect. Basically, the middle of her heart is missing, a common problem in children with Down syndrome. She managed to spend some time at home in Herndon, but operations to repair her heart have kept her in the hospital almost four months. Her mother sits nearby, pumping milk. Her dad joins them every evening.

Day and night, the CICU unit pulses with a steady rhythm as teams of 40 to 45 nurses, doctors, specialists, technicians, orderlies and cleaners on each shift move about their allotted tasks overseeing the unit’s 26 rooms.

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On morning and evening rounds, a team of doctors and specialists wheel mobile terminals, like robots from “Star Wars,” from room to room discussing each patient, balancing what can be done with what should be done. Although care sometimes begins in utero, many children are diagnosed after they are born, and if all goes well, doctors follow these tiny patients to adulthood.

“I believe that there is a certain amount of suffering that all of these kids go through,” says Jamie McElrath Schwartz, an attending physician. “All of these things we do to them hurt, but the suffering is for a meaningful end. If we can get Teddy well enough that he can go home and go to kindergarten, then that is really what is worth it. But if I can’t get Hydeia home again, then it is hard to make her suffer.”

Room M366 is the only home dark-haired Teddy has known. His parents, Aida and Dan Wiebke of Arlington, have decorated with animal friezes and stickers. An animal mobile hangs above his head, plush toys surround him. By the bedside Aida cups his head and calls him “my little bug.”

Teddy was diagnosed before birth with hypoplastic left heart syndrome. He has been on the heart transplant list for six weeks; the average wait for a patient with his blood type is three to four months, says Schwartz.

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“We have had kids wait as long as nine months,” she says. “I don’t know that Teddy will make it nine months, though, so we hope that he will get something sooner than that.”

In Room M364, Michael Eppler’s heart has stopped. His dad, Jeremy, had been feeding him a milk supplement; Michael’s tubes had been taken out that morning.

Michael coughed . . . and stopped breathing.

“I called the nurse. Before I knew it, more than a dozen people were in his room, and I just wanted to get out of the way,” Jeremy says.

Jeremy stands clenching and unclenching his hands in the corridor, suddenly faced with the worst possible outcome. Perhaps two dozen people enter and leave Michael’s room. Amid the quiet urgency, chest compressions get him going again. Medications are called for and received, equipment wheeled in and out, extraneous furniture removed. Needle casings and surgical gloves soon litter the floor.

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Jeremy calls Indira, at home in Silver Spring, to tell her what is going on. “I remember telling her to drive safely,” he says.

Heather Langlois, a social worker at the hospital, eventually found Jeremy standing petrified and looking through the nurse’s portal, a window into Michael’s room, watching his son’s life in the balance.

“Heather helped make sense of the chaos,” he says. “Suddenly, there was something routine about how efficiently they all operated.”

Eleven long minutes later, Michael was back and stable.

In Room M369, the ventilator beeps a warning every few minutes and the nurse has to come in and adjust the oxygen mask over Hydeia’s nose. Hydeia is the second of seven children in her Waldorf, Md., family, and the only girl.

When out of the hospital, she gets medications continually through a permanent port, which allows her to go to school and live a relatively normal life.

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“Her heart really is doing the best it can, but it hardly moves,” Schwartz, the attending physician, says. “Anything that makes the lungs sicker will bring her in — like pneumonia or a little virus — and make her right heart struggle and she’ll almost die. Then we’ll treat her lungs and slowly she’ll get better, but she doesn’t seem to be bouncing back as quickly as she has in the past and so we all have some concerns that this is not going to happen — and that her heart is just going to stop and we won’t be able to restart it.”

Hydeia’s mother, Sherian, sits in a big pleather armchair looking up at her daughter. When the nurse arrives to adjust the oxygen, Sherian gets up and helps spread Vaseline to protect the skin around the girl’s nose. Then Hydeia closes her eyes and goes back to sleep and Sherian returns to her seat, by the window at the end of the bed, to wait.

In Room M366, little Teddy Wiebke is dying.

His mom, Aida, is lying beside him, telling him of her love. His dad, Dan, stands bent over his wife, looking physically broken in half. Aida’s sister and her mother take turns holding them both.

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“I don’t think we can find him a match in time, and I don’t think we can get him stable enough to have the surgery,” says Janet Scheel, medical director of Children’s heart failure/heart transplant program. “This is not where we ever want to be. You guys have been nothing short of amazing. But right now we are just prolonging his suffering.”

The doctors and nurses file outside and leave the Wiebkes alone again. A few minutes later Teddy’s dad comes out.

“We are ready now,” Dan says.

And so the nurses and doctors undo everything they have worked so hard for so long to accomplish. They undo everything that was keeping Teddy alive. Aida and Dan hold their son.

Outside the room the doctors stand watch as Teddy’s now unsupported heart rate drops — 120 . . . 78 . . . 48 . . . 44 . . . 24 — and then is quickly and quietly gone. Inside Teddy’s room there is the sound of purest grief given voice. The sound of a broken heart.

The doctors and nurses cry and hold each another.

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In Room M365, Abigail had bounced back a few days earlier. She even had her breathing tube removed. It didn’t last. Three days later, Abby is struggling to breathe again and is reintubated. The doctors now plan a tracheostomy, which will allow her to breathe through a hole in her throat. It will enable her to have a stable airway, be awake, get physical and occupational therapy, and eventually go home.

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Her dad, Joseph, is excited at the possibility of getting her home again, “She was happy at home, ate and slept well, and didn’t fuss much. She smiled and even said a few words. She started to scoot and roll on her back and tummy right before we took her in for surgery in March.”

He calls her a gift from God.

In Room M369, Hydeia has been in a coma for most of the past week. Her bed has been turned to face the window so that she can see outside if she regains consciousness. Her mom, Sherian, and her father, Michael, are sitting by the end of her bed staring up at their daughter.

Last night Hydeia came around just a little. “She didn’t open her eyes at first, but she squeezed the nurse’s hand and she squeezed my hand. But then her heart rate went crazy again,” Sherian says.

A CT scan shows no improvement, and there are signs of renal failure. Against all hope, they are losing Hydeia.

John Torrey Berger III, Hydeia’s doctor for 12 years and the medical unit director for the CICU, joins the parents at the end of the bed. She is dying, he says.

Sherian’s head drops to her chest. There is a prolonged silence.

Michael eventually looks up at his daughter breathing peacefully. “I don’t want to pull any wires or any tubes,” he says. “I put this in God’s hands.” It is hard for him to accept that she is dying. “I’ll miss her,” he says, “and I’ll never stop loving her.”

“It is hard for me to talk about this, too,” Berger says through his own tears.

“I have spent most of my life praying for her to reach this point,” Michael says. “When she was born, I prayed at that time to have one year with her, and I have had 18 years.”

They must gradually unplug their daughter from the technology that is now only extending her pain.
“You are not choosing life and death here,” Berger says. “That is already decided. You are choosing who is going to be with her and how she will be loved and supported when the time arrives.”

Their beautiful Hydeia died the next day, her mom and dad at her side.

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In Room M366, Teddy’s stuffed animals have gone home, the cleaners are in and his sheets have been removed. The white board of contact numbers will be wiped clean, and the miracle machinery that kept him alive will be reset for the next baby with a damaged heart.

Among the beeps, chatter and chirps of the ward machinery, Jeremy’s guitar can be heard in the far background, playing “Stairway to Heaven.”

“It is one of those times in the unit when you just kind of look around,” Langlois says, “and you have to find something good to hold on to.”

Editor's Note: At 6:05 a.m. on October 29, 2015, young Michael Eppler passed away.  He died peacefully in his parents’ arms in the Cardiac Intensive Care Unit.

About this story

Just over 20 years ago I discovered drawing — an experience much like that of a drowning man who discovers he can float. At the time my son Joe, then 3 months old, was lying unconscious after a major heart operation. Each night I would sit beside him and draw him, hoping against the odds that he would regain consciousness.

Earlier this year David Wessel, chief medical officer of the Children’s National Health System in Washington, invited me to spend a few days at his hospital’s Cardiac Intensive Care Unit. The offer came after Wessel saw an article I had written about my son, who is now 21. (Yes, after several scares Joe made it to adulthood.)

Every child in the unit is very sick. The families dealing with their children’s sickness are emotionally raw, frightened and fighting for hope, much as I was. At first it seemed very unlikely that I would be able to find parents willing to let a stranger into their most vulnerable of times, but it turned out that our shared experience allowed them to trust me to tell their stories.

So I would hang out and draw. And they would go on about their days. We would talk, but mostly I would just show up and draw. I think I was a welcome distraction for them, after long weeks and months in the hospital. The parents enjoyed having someone outside medicine paying attention to their children. And I think the parents connected with the intimacy of the drawings.

Those parents have received the originals of the sketches that I made. For some they will be keepsakes of hard days of worry with gloriously happy endings, but for others the drawings are memorials to loss and young lives cut far too short. It was a privilege to spend time with them all. — Richard Johnson

Editor’s note: At 6:05 a.m. on October 29, 2015, young Michael Eppler passed away. He died peacefully in his parents’ arms in the Cardiac Intensive Care Unit.

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