In room M366, a mother holds her hand flat under her baby’s back. Her arm is interlaced carefully through a tangle of electrical wires and fluid tubes to where she can feel the warmth of both his shoulder blades in the palm of her hand. For hours like this she gently, ever so gently, rocks him and talks with her lips to his ear about everything and nothing at all.
In room M364, the lights are out, the curtains drawn, and there is the sound of a guitar. A young father plays for his infant son lying on the bed prostrate and exposed after open-heart surgery. The father does not read music but plays instead by ear and instinct through a catalog of Dave Matthews, Led Zeppelin and Pearl Jam classics. He plays like you wish you could play, 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 and beautiful memory. And he never takes his eyes off his boy’s vital sign monitors.
In room M369, a lanky red-dreadlocked teenager 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 clean up. “Why do I even have to be here?” the beautiful girl mumbles from almost-sleep. Her mom and aunties stand by the end of the bed, unable to answer.
In room M365, an infant girl breathes fast around the tangle of wires in her nostrils. Her eyes move beneath her eyelids in sleep. On TV, a children’s program squeals for her attention but she sleeps on — with one small arm over a pink elephant, and the other arm over a pink doll with a big heart on its chest. Only when her mother sings quietly to her from the chair beside the bed do her eyes snap open for a second. Then she is in deep sleep again — dreaming of mom and pinkness.
There are 26 rooms in the Cardiac Intensive Care Unit (CICU) of the Children’s National Medical Center in D.C. The unit takes patients from throughout the metro area and overseas. The care practiced here is intensive and complete starting before birth, and, if all goes well, it follows these tiny children to adulthood. It is very rare that there are any empty beds in the two adjoining wards that form the unit.
Most of the beds are filled with newborns and very young children. The entire unit is designed to provide the best possible care specifically for babies with heart problems and their families. Children, who would otherwise die, are given every possible support to help them survive. There are life-extending miracles happening in every room here — every minute of every hour of every day. These are four of them.
In room M366, there is very frail, five-month-old Theodore (Teddy) Wiebke with a full head of dark hair. For Teddy, this room has always been home. His mom and dad, Aida and Dan, have decorated it with animal friezes and stickers. An animal mobile hangs above his head. By his bedside, Aida cups his head and calls him, “my little bug.”
Aida and Dan are from Arlington, Va.
Teddy lies unconscious surrounded by wires, tubes, bandages and plush toys. One toy in particular, a bear dressed in a 1920s swimsuit with a heart on the front, is always nearby. “We call him ‘swimming bear,’” Aida said laughing. “When he gets ready to come home we plan to make an outfit for him like this.” Aida never drifts far from Teddy’s side, and almost always has her hands on him somewhere, unable, but desperate to hold him close.
Teddy has hypoplastic left heart syndrome — a congenital heart problem in which the left side of the heart and aorta are too small and unable to function. Usually cases like Ted’s are successfully treated by three surgeries — one at a few days old, the second at four months, the third at two years. Teddy has had the first two surgeries, but due to some additional heart plumbing complications, has failed to thrive. Teddy is now on the heart transplant list.
“He (Teddy) has been on the list only six weeks, and the average wait for someone of his blood type is probably in the range of three to four months. We have had kids wait as long as nine months. I don’t know that Teddy will make it nine months though, so we hope that he will get something sooner than that,” said anesthesiologist and critical care physician Jamie Schwartz.
To extend his ability to endure a wait for a new ticker, Teddy had an artificial pump called a Berlin Heart fitted in May. The Berlin device is outside of Teddy’s body attached by flexible tubes through his chest to give his heart a little helping hand in dealing with the stress of it all. It does not entirely replace the natural function of his heart. Instead, it works along with it to pump blood.
“I am not sure he will make it to transplant, or that he will do well after. But we keep our fingers crossed and support him and his folks,” Schwartz said.
In room M364, Michael Reinhartdt Eppler, wearing nothing but bandages, tape, wires and tubes is unconscious. At the head of Michael’s bed stands a blue stuffed object, shaped like a crucifix.
Michael was diagnosed prenatally with complex congenital heart disease. When he was born he had a hole in the middle of the heart, the main arteries were switched, and his right ventricle was very small. He is now recovering from the second part of the same three-stage heart operation as Teddy. The operation seems to have been successful for Michael.
Dad, Jeremy Eppler, is from upstate New York. Michael’s mom Indira Gradys de Eppler is from Nicaragua. But they currently live in Silver Spring, Md.
“We both play guitar at church, and music is one of the ways that we pray. I erroneously expected that we would not be able to touch him in the CICU, so music seemed like the best alternative … to let him know that mom and dad were there with him while offering up some prayers,” said Jeremy.
When Jeremy plays he follows all of his son’s vital signs on the monitor. “Before surgery, some of Indira’s songs would make him sad, others would get him excited. As he recovers and remains heavily sedated, I play mostly so that he knows he’s loved and not alone. And it helps me keep my sanity,” he said.
In room M369, Sherian Hart is sitting in a big pleather armchair looking up at her daughter. She talks to Hydeia when she’s awake. Hydeia wears her hair in the same red-tinted dreadlocked style as her mom. “She saw my hair and liked it so much that she had it done the same,” said Sherian. Hydeia is 18, the second of seven children — the only girl. On the wall beside her bed are photographs of Hydeia in better times looking like a normal, happy, smiling, goofy teenager.
The Harts are from Waldorf, Md.
Hydeia has idiopathic pulmonary hypertension. With this condition, the vessels that carry blood to her lungs from her heart have very high resistance, causing the right side to strain. Hydeia has lived with this condition — and has been treated by this hospital since she was six. She gets medications continuously through a permanent IV. This has allowed her to live a relatively normal life at home and to go to school.
Hydeia has been admitted 16 times in the last decade. This time she was admitted with symptoms of vomiting, sudden unconsciousness and a low heart rate – all signs that her right side is now acutely failing.
“She has done this before where she comes in, and her right heart is failing. Her heart really is doing the best it can but it hardly moves. 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,” Schwartz said.
Hydeia’s ventilator beeps a warning every few minutes, and the nurse has to come in and adjust the oxygen mask over her nose again, making sure of a proper seal. While the mask is off, her mom helps her spread Vaseline around her nose to protect her skin. After this, Hydeia closes her eyes and goes back to sleep, and Sherian returns to her seat by the window at the end of her bed to wait.
In room M365, eight-month-old Abigail (Abby) Rose Moore is wrapped, burrito style, in a hospital blanket. Two small feet with striped pink socks stick out. Her mom, Alejandra, is busy pumping milk for her nearby.
Abigail did manage to spend some time at home in Herndon, Va., before her initial operation, which was expected to keep them in hospital only a week. It has now been almost four months, and Alejandra rarely leaves Abigail’s bedside. Dad, Joseph, travels from work in traffic to the hospital every evening just to spend a couple of hours with her.
Abigail has an atrioventricular canal defect, where there is a hole in the top chamber of the atrium and another hole in the chamber of the ventricle. Basically the middle of the heart is missing. It is a common defect of children with Down Syndrome.
“She had her original repair at another local hospital and didn’t do well with it. Her repair had some leakage … and she got an external wound infection,” said Schwartz.
Since her arrival at Children’s National Medical Center CICU, Abigail had another operation on her heart to repair the leak and is undergoing treatment for the infection. “We hope she will be able to get off the ventilator and move toward eating and going home,” said Schwartz.
Abigail has a cute, small nose, and the tubes, wires and tape that cover her face can’t hide her beauty. She has a healthy pink color to her cheeks probably brought on by the oxygen boost from the ventilator attached through her nose.
“We love and enjoy Abby very much. In our minds, she is not just a ‘Down Syndrome baby.’ We feel she is a unique and precious life and gift from God who has been entrusted to us,” said Joseph.
Day and night, there is a steady pulsing rhythm to the CICU unit as the team of nurses, doctors, specialists, technicians, orderlies, and cleaners all move about their allotted tasks. Lifesaving technology is everywhere. On morning and evening rounds, a team of doctors and specialists wheel mobile terminals from room to room discussing each patient.
“I believe that there is a certain amount of suffering that all of these kids go through. 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,” said Schwartz.
There is a high-tech simulation training room on the ward. It contains a robotic mannequin — completely interactive — wired to produce all the potential complications that the CICU team can expect from a patient. Every aspect of the room is identical to those containing their living, breathing charges. Regular surprise drills are run to keep everyone in top shape. Three cameras and three microphones record everything. After a drill, every movement, position and decision can be replayed and studied to allow improvement, for cases in which a single second may decide a patient’s life.
In room M366, a very frail Teddy is dying.
His mom, Aida, lies beside Teddy on the bed with her lips pressed to his ear telling him of her love. His dad, Dan, stands bent over his wife, looking physically broken in half. Aida’s sister and mother take turns holding them both. They all stand around the bed, cry, hold one another, and cry some more. Aida and Dan take turns on the bed beside Teddy.
Eventually the doctors and nurses they know so well come in as a group — as they knew they would.
“I don’t think we can find him (Teddy) a match in time, and I don’t think we can get him stable enough to have the surgery,” said Janet Scheel, Medical Director of the 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 outside.
“We are ready now,” says Dan.
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. Then they file outside again, and Aida, Dan and their family are given their last moments in privacy to hold their son.
The doctors stand and watch Teddy’s monitors outside as his now unsupported heart rate drops 120 – 78 – 48 – 44 – 24, and then is quickly and quietly gone. From inside the room, there is the sound of purest grief given voice.
“This little one (pointing to Teddy’s room) — everyone in the unit is very touched by him. He has lived here his whole life. We have seen all of his milestones. You can see all of his monthly birthday signs that I made at the beginning of each month,” said Heather Langois, Social Worker for Children’s National Heart Institute,.
Outside of Teddy’s room, with nothing left to do or to decide, doctors and nurses unabashedly cry and hold one another.
In room M364, Michael’s heart has stopped. He is 14 weeks old.
His dad, Jeremy, had come in specially that morning when he found out that Michael’s tubes were out — and that he could feed him properly again. He was doing just that, feeding his first-born son a milk supplement, when 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 said.
Jeremy stands outside in the corridor suddenly faced with the worst possible outcome. Dozens of people enter and exit the room trying to keep his son’s heart rate from dropping again. From outside it looks like chaos inside the room and out, but it is a calm, quiet chaos — as everyone does exactly what they have been trained to do.
Langlois, the social worker, eventually found Jeremy petrified, looking through the nurse’s portal window watching his son’s life in the balance.
“Heather helped make sense of the chaos, and talked me through his status. My confidence grew with her coaching. Suddenly, there was something routine about how efficiently they operated,” Jeremy said.
Eleven long minutes later, Michael was back and stable.
In room M365, Abigail has bounced back a little. Enough so that she could have her breathing tube removed. It didn’t last long though. Three days later, Abby was struggling to breathe again and was 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 good physical and occupational therapy, and eventually go home.
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,” he said. “She started to scoot and roll on her back and tummy right before we took her in for surgery in March.”
Till then, her mom is with her at the hospital all day, every day, and her dad is in traffic every evening.
In room M369, Hydeia has been in a coma for most of the last week.
“She has had bleeding into her brain and confusion and unconsciousness. She was placed on a ventilator last night and is in what laypeople would call a coma. I’m not sure what the team will do today as she is declining and has a terminal illness,” said Schwartz
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 said.
Hydeia’s bed has been turned to face the window so that she can see outside if she regains consciousness again. Her parents, Sherian and Michael, are sitting by the end of her bed staring up at their daughter.
A CT scan shows no improvement, and to further complicate things, there are signs of renal failure. Hydeia is dying.
It falls to John Torey Berger III, Medical Unit Director for the CICU and the Director of the Pulmonary Hypertension Program, to break the news to her anguished parents. Berger has been Hydeia’s doctor for 12 years.
Berger joins them at the end of Hydeia’s bed, “I guess what I am really trying to say here is that I really don’t think that she can recover, and that she is dying.”
Sherian’s head drops to her chest. There is a prolonged silence.
Michael eventually looks up at his daughter breathing peacefully in the hospital bed, his words a confused jumble mirroring his scattered thoughts, “I love her. If she is dying … if she is leaving … I don’t want to pull any wires or any tubes. It is not my decision to make a choice of a human life, although I understand what you are saying. I put this in God’s hands, beyond that, no matter what the situation, I know that my daughter is okay. Yes, if I don’t have her with me, I’ll miss her, and I’ll never stop loving her. But I am not signing off on anything. It is hard to really accept that this is reality,” Michael said.
“It is hard for me to talk about this, too,” said Berger through his own tears. “She has been my long-term patient, and I love her. We’ll try to give you as much time as we can.”
“I know where your heart is, I really do. But this is the hardest time of my life. I have spent most of my life praying for her to reach this point. It is like she just came out of this seed and blossomed into a beautiful flower,” Michael said. “When she was born, I prayed at that time to have one year with her, and I have had 18 years.”
In the end, the doctors leave Michael and Sherian alone with their daughter, so that they can begin to process what has happened and begin to decide how and when they want to gradually unplug their beautiful daughter from all of the technology that is now only extending her pain.
“You are not choosing life and death here. 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,” said Berger.
Hydeia died the next day. Her mom and dad were with her from her beginning in life, and were there with her right to the end.
In room M366, Teddy’s stuffed animals have gone, the cleaners are in, and his sheets have been removed. His animal stickers still dot the walls, and his animal mobile still swings above the plastic, soon-to-be sterile bed surface. 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 broken heart. And hard as it is on this day, the doctors and nurses will reset as well, ready to care for the next child that needs them.
“It is one of those times in the unit when you just kind of look around and you have to find something good to hold on to,” said Langlois.
How did this piece happen?
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 (above), 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 Joseph who is now 21.
Every child in the CICU is very sick. The families dealing with their children’s sickness are emotionally raw, frightened and fighting for hope, much as I was back then. 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 and ignore me. We would talk sure, but mostly I would just show up and draw. The parents enjoyed having someone outside medicine paying attention to their children. I was a distraction for them, after long weeks and months in the hospital. And I think the parents connected with the intimacy of the drawings. All the 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.
For that piece on my son click here.
Write to me at firstname.lastname@example.org