A Hospital Experience Like No Other

In 2009, our family and another rented bikes and braved the beautiful and traffic-free carriage trails on Mt. Desert Island in Maine. What began as a treat to be on land after our family of four had been snugged up on our 27’ sloop through stormy seas turned into a nightmare. For a week, we’d been singing sea shanties and playing every card and dice game we could dream up in between sea-sickness and occasional stints at the helm. Now, kitted out with helmets and rad (for rentals) bikes, the three older boys took off up the road’s huge hill, headed for the trails and leaving dust in their wakes. The adults followed at a more leisurely pace, with me riding far behind next to our 8-year old daughter who had persuaded us to rent her very own bike rather than a trailer bike. As she was a decent cyclist at home, we agreed, much to our later distress.

The short version of what seemed an endless day is that on the downhill, our intrepid daughter wanted to catch up with the boys. She raced in front of us, heedless of our calls to “be careful!” About 200 yards in front of us, I watched in utterly helpless horror as her small body flipped over the handlebars, and the bike skidded off to the side of the gravel trail. She somersaulted twice, then slid another ten yards or so to a stop, her crumpled body lying still. In the brief time it took for us to get to her, every horror that could pass through a parent’s mind raced through mine.

She was stunned, bleeding, crying, and only vaguely coherent, but conscious and able to move, albeit painfully. She was alive and her spine was not broken—at that point, it was all that mattered, for I’d been certain she was paralyzed or dead. As there was no cell reception on those deeply wooded trails, we left our bikes with our friends and hiked back out to the road, a mile or so away uphill, to wait for a car (none) or an island bus to transport us to the hospital. It was a nearly two hour wait in the hot sun, but once we’d flagged down and boarded the bus, the driver gave us some water, nixed the regular bus route, took us directly to the Island Hospital, and gave my daughter the pretty beaded bracelet she’d been wearing on her own wrist. My daughter wore that bracelet for months.

At the hospital, we were treated efficiently—she was examined and x-rayed. They told us she did not have a concussion despite the massive impact to her chin, but I could see the signs of it later. Then, the staff left her dad and me in the room with her, giving us a pink plastic bowl of warm water, a few washcloths, and some tweezers. They told us to pick the pebbles out of her chin and the other large sections of her limbs scored with road burn and inflamed with bloody gravel. We did the best we could amidst her squirming and crying, and our own shaking hands. The doctor returned, applied some salve to her limbs, and glue and a huge bandage to her chin. We left to catch the bus back to our sailboat, supporting our miraculously intact daughter who sported thick gauze and tape covering her face from chin to ears.

She was a trooper, and with the occasional check-ins of anEMT friend who happened to be along on our group trip, we were assured there was no infection. She fared the rest of the voyage on a liquid diet and with many painful attempts to laugh. I recall she may have managed a few small lollipops. I suspect her surprisingly good humor came from imagining feeling better when she returned to school and enjoying the glory of telling the harrowing story of her wound. In our family, we’ve always said that the best thing about surviving adventures (such as when my 9-year-old son, on a camping trip, ended up with frostbite on top of Mt. Washington in a blizzard on the 4^thof July), is the stories one gets to tell afterward.

After she’d healed, her pediatrician suggested we take her to Shriners Hospital in Boston to have the scar on her chin removed. She refused. I didn’t push it because I remembered my own mother dragging me to plastic surgeons to get a scar on my cheek removed, and I fought her every step of the way. Her attempts made me feel ugly and disfigured (though the scar was minor), and I refused to make my daughter feel this way. Besides, she proclaimed, “This scar is my badge of honor. I survived!”

Fast forward. She is now 17 and wants to be an actress, and the scar makes her feel self-conscious. This fall, she asked me if we could go to a doctor to get it removed. Yesterday I took her for a surgical consult at Shriners Hospital in Boston. And this place, Shriners Hospital, is a hospital like no other.

From my first phone call, when I spent twenty minutes talking with Ernesto whose kindness and patient listening took me by surprise given my past interactions with hospital personnel, I was impressed. He told me this conversation was important so that he could connect us with the appropriate surgeon, and he gave me his direct telephone line in case I had questions, and his email to which I could send photos of her scar so that the surgeon would know what to expect.

Shriners Hospital in Boston is one of 22 non-profit medical facilities in North America, owned and operated by Shriners International. The Shriners, founded in 1870, were formerly known as…wait for it… the “Ancient Arabic Order of the Nobles of the Mystic Shrine,” and are an appendant organization to the Freemasons. Their members are known as Shriners. (Yes, they are the ones seen marching in parades wearing the eccentric hats known as fezzes.) Their hospitals provide care to children under 18 who suffer from a variety of burns, skin disfigurations, and orthopedic conditions; and they offer care regardless of families’ ability to pay.

So after all this preface…why am I writing about Shriners Hospital? Because, seriously, every hospital in the country ought to be like them. I simply could not believe the positive experience my daughter and I had from beginning to end.

I’ve spent my share of time in adult hospitals, and am nearly always grateful for the help I’ve been offered, though I usually feel a bit like an object being inspected on a conveyor belt. One sits in various waiting pens for hours, has a brief visit with an exhausted and harried resident, and is either admitted or discharged. With two active and accident-prone kids, I’ve also spent my share of time in children’s hospitals. They tend to be far superior to adult hospitals in terms of friendliness (and the staff wear funny and gratefully distracting scrubs). But there, too, we’ve been shuffled through the processes so quickly (except in the ER where several times we waited 5 or more hours in the middle of the night), that even with the printed discharge instructions, our only recourse for any concerns was to make another appointment with our primary care physician—more insurance forms, more money. But it’s the only option to ensure one’s child is safe and healthy. And for those many families without insurance, there is no option for follow-up, except another return to the emergency room.  

At Shriners Hospital, not only was my initial call met with unprecedented attention, compassion, and personal connection, the actual experience at the hospital stood in stunning contrast to any other hospital experience I’ve had. We were greeted in the beautiful and spacious entryway, decorated with a grand mural of Boston’s history, by friendly and welcoming people who told us exactly where to go and what to do, and gave us bright orange identification stickers. My 17-year-old daughter found it quite humorous that her sticker indicated that if she were to get lost, she should be returned to me (my name and picture were included on her sticker). We joked that with my directional challenges, it ought to have been my sticker that said I should be returned to her!

On the 6^th floor, we entered an enormous rotunda of a waiting room, surrounded by windows, furnished with scores of cozy purple sofas, and fully populated by an ethnically diverse group of families and other individuals. A musician played guitar, surrounded by a group of children tooting and banging on his borrowed instruments—their pleasure so notable that their various disfigurations were easily overlooked. Multiple Nintendo stations occupied teens, enormous photos of former, healed patients and their caregivers adorned the walls, and there were several visible staff members ready to assist in any way needed. When I looked up to the inpatient floors above, surrounded by windows, I could see scores of toys from Nerf basketball nets to hobby horses filling the 360° panorama. Each of the clear panes sported large window-painted affirmations such as “Don’t ever stop hoping,” and “Fun is here.”

We were called in almost immediately for my daughter to have the basics done by Katelyn, a friendly nurse who clearly knew how to interact with adolescents. She invited, and then listened, as my daughter told the story of her scar and why she was there at the hospital today, after all these years. The examination room itself was as welcoming as one could be. Pictures to appeal to all ages adorned the walls, and the examination chair looked like a barcalounger. Affixed to the ceiling were images of lighthouses and the sea for patients to focus on during exams. In a sturdy box affixed to the door were a selection of a dozen or so books free for reading and taking home. In our brief wait after Katelyn left, I actually started reading one on the Arctic, but put it back quickly, remembering I wasn’t a kid or a patient! (It was, however, a FAR more interesting diversion than the collections of rumpled and out-of-date House Beautifuls or Sports Illustrateds that occasionally linger in the corners of doctors’ examining rooms.

Shortly, another woman entered the room and introduced herself as a social worker, Lisa, who would be our liaison from this moment until the conclusion of any and all treatment my daughter might have in the future. She said she would stay in the room to listen with us to what the surgeon said, so that if we had any questions or concerns, we could call her anytime. I don’t know what the statistics are on what percentage of the things doctors say to patients is actually remembered by the patients, but I suspect it is fairly low, given the stress of the situations. Lisa gave me her card with her phone number and email, and insisted that it was her job to be available to both me and my daughter, and that neither of us should hesitate to call her.

The surgeon, Dr. B. arrived, relaxed and unhurried. He asked my daughter to tell her story again, though he’d already heard it from the nurse. He gently and respectfully inspected her chin, asked her about her feelings about the scar, and actually—for the first time—gave a name to the type of scar she has: a “traumatic tattoo.” Not, of course, the type of tattoo any teen would be interested in having. He clearly outlined the options for revision, from the most conservative to the most invasive, and described to my daughter exactly what each procedure would include, what kind of pain management would be offered, and how long it would take to feel better. We decided together that starting with the most conservative treatment would be best, and though my daughter seemed a bit nervous about the future procedure, I could see her hope that she might actually be able to get rid of the scar that she no longer sees as her badge of honor.

After Dr. B. left, I asked Lisa about how much money this kind of work, and this appointment, would cost. As most of us know, health insurance covers only “medically necessary” care. Issues that cause emotional and/or social distress for patients are not considered medically necessary. She told me that the hospital would bill insurance, but that usually they will find a way to cover what insurance won’t. She assured me that we could work out something that would allow my daughter to have the surgeries in a way that would be financially manageable for our family.

Katelyn then whisked us off to a photo studio where images of my daughter’s scar would be taken for her medical records. A kind young man with severe facial burns offered to let us go ahead of him because his photo shoot would be much longer. We entered what looked like a modeling studio—umbrella and big lights and a stage—all orchestrated by a jolly, pudgy, middle-aged woman in scrubs and sporting a big Nikon camera. Her combination of efficiency and humor had my daughter in and out quickly and feeling quite unselfconscious. We thought, then, that we were finished and would be leaving.

In addition to the incredibly positive experiences of the people and places I’ve already described, and the unusual financial generosity of this hospital in these times of managed care, I was utterly unprepared for the final wonder of our visit.

Our nurse, Katelyn, met us outside the photo studio. She asked Lisa, the social worker, “Is Barbara here today?” Then she turned to my daughter and asked, “Would you be interested in meeting with Barbara who helps kids use makeup to cover their scars?” Yep. So, we were escorted to another bright room in whose center sat Barbara, a stylish and well-made up woman with blond hair, black boots, black leather pants, and a black top. After her smiling welcome, she laughed, “It seems to be teen day today! Let’s see what magic we can make together!”

In a bizarre inversion of a department store makeover counter (which my daughter hates because she says the people always make her feel like she is ugly in her natural state), THIS makeup studio intended no “makeover.” The assumption was that the child is beautiful already, but might feel better if one part could be made a little less obvious. Barbara experimented with a few cover sticks, then exclaimed, “For that gorgeous fair skin, I have to go to the closet!” She returned with a new stick, dabbed a bit on, blended, put a bit of powder over it, and said, “Okay, go look at yourself in the mirror and see what you think.” My daughter walked to a large full-length mirror, and lifted her head to see her chin. I was sitting behind so I could see her eyes light up in the reflection. The scar was pretty much invisible. She was smiling as she returned to her seat in front of Barbara.

I asked Barbara, “Can you tell me what to buy so she can use this?” She smiled at me. “You don’t have to buy it. She can have this. It’s free. She can have as much as she needs until she’s 21.” She gave my daughter the bag of makeup and her contact information, and told her to call whenever she needed more more. As we were departing, another teen girl waited in the doorway. The girl’s nurse told Barbara, “This lovely girl needs some help with her legs; she has her gown with her.” Though I was sad this young girl would require far more extensive expertise from Barbara’s magic hands and makeup than my daughter had, I felt so grateful she would be receiving her services.

My daughter and I will be returning to Shriners when the first surgery is scheduled. I’m sure it will be a tougher experience than this consult, but I’m also confident that the way the hospital is run, and the way patients and their families are treated, will make what’s tough a far calmer and secure experience than treatment anywhere else. The campaign for the Shriners Healthcare System reads, “Healing with Love.” Medical America has a lot they could learn from Shriners.

As I drove home, I kept wondering why, why, why, can’t all medical facilities be like this one? Hey, even grownups like nice people, pretty pictures on the wall, and stickers when they leave.