Going the Distance

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This spring marked the 10th anniversary of the opening of the Maria Fareri Children’s Hospital. It’s a place which holds special importance to me as I have been there as a physician, a parent, and (since one of my children was born there), a patient. The hospital was built in memory of Maria Fareri, a 12 year old girl from Connecticut who succumbed to rabies, suspected from bats near her Greenwich home. Although she didn’t survive, her parents appreciated the exceptional care they received at the Westchester Medical Center, but also recognized the region’s need for a more family–centered hospital. In 2004, MFCH opened its doors, the “Disney of Hospitals” where patients are treated in child-friendly neighborhoods replete with fire-trucks, trains, and teen computer rooms. Visitors can enjoy a small baseball museum, doll collection and walk-through fish tank. It is a hospital with attractive amenities staffed by excellent clinicians: yet it is a hospital, and therefore a place that you never want to need.

Each spring, families and community members gather to walk in the “Go the Distance” fundraiser on the sprawling hospital campus. The many miracle children are there as well: from extreme-premature babies to children who have survived cancer or near-fatal accidents. When my kids were younger, I walked a few times with my double stroller.  I hadn’t returned for many years until this spring, when we joined a classmate of my older son whose accidental peanut aspiration landed him in the PICU for 7 precarious weeks.

For the years we did not walk, I felt a need to separate. Perhaps it was my hectic family life, my involvement in JDRF, or the intense familiarity of it all. Though I was incredibly grateful, so much of our family time is dedicated to medical care: 24/7 diabetes management, physician visits (at least 20 annual visits to sub-specialists…) it was the last place I wanted to be.

The first time a child of mine was hospitalized was when Leo was 4 months old. It was Christmas Day, I was on call, and he had been wheezing for several days. Despite home nebulizer treatments and steroids, he deteriorated overnight, and so I brought him with me to the hospital, had him stabilized in the ER, and went to round on my patients after Adam made arrangements for my other children and arrived to relieve me. Although it was distressing, I thought it was too early in the morning to call for help from my colleagues, and I knew he would be OK once given oxygen. I was asthmatic as a child, and I had treated hundreds of babies with respiratory viruses.  Of course, it feels different when it is your own child. I found myself  asking the pulmonologist questions like “how bad is it to have less oxygen going to the brain, even if it’s only for a short time?”, knowing full well he would be fine. I suppose it was sheer adrenaline that got me through those 24 hours until my colleagues took over. It was also helpful to have good coffee and muffins from Au Bon Pain in the hospital lobby, as well as the cooperative residents who came to my son’s room to run through the patient list and update me. What wasn’t helpful? The comment of a community physician when I called to update him on his patient and mentioned my son’s admission, he replied “well, now you know what it feels like from the other side” Really??  I was angry and hurt but in time, I knew that he meant well.

The next hospitalization was when Leo was diagnosed with diabetes and went straight to the PICU (see Diabetes Diagnosis ). It was completely unexpected and life changing. It was the first time I heard this phrase: Type 1 Diabetes is no longer a death sentence, but it is a life sentence. We spent the next week stabilizing his blood sugars, learning diabetes management, and adjusting to a new normal. There was a line out the door from visitors and hospital staff including clerks, nurses, and physicians. These were people who had worked with me for a decade.  They brought enough balloons, toys and stuffed animals for a classroom of kids. We felt loved and cared for, but I knew that my relationship with the hospital had changed forever.

Twenty months later, Ben (my middle son) was hospitalized for the dreaded swine flu. What began as cough and fever quickly developed into respiratory distress before our eyes. It was terrifying. We will never forget our panic as we watched his 6 year old body struggle to breathe like a fish out of water. Grateful to be in the hands of the PICU staff, we were relieved when he was put on a ventilator, and even more relieved when he could breathe on his own. It all happened so quickly, at baseline he was my healthiest child, and he improved over the course of a few days. My husband claims he still hasn’t recovered from this hospitalization. I still shut my eyes, shake my head and shudder when I recall that image of him struggling to breathe.  It was traumatic for both of us, and yet once he turned the corner, I was confident he would be fine.

The last hospitalization of my children was for Leo when he was 3 years old. He had a simple gastroenteritis which exacerbated his diabetic condition, and it took a few days to stabilize him in the hospital. We were relatively relaxed this time, there were no surprises, and Leo charmed the house staff by showing his independence while testing his own blood sugar and discussing the upcoming Superbowl.

Although it was a rather routine admission, I left the hospital more melancholy than ever. I thought back to the countless children with gastroenteritis whom I had treated and discharged, most of whom would never be admitted again. For hospital physicians, the pressure of discharge planning begins as soon as the physician examines the patient in the emergency room. In pediatrics, the patients and families are happy that they are healthy enough to leave, anxious to put this experience behind them. We certainly felt this way after Ben had the swine flu. A boy the same age in a neighboring town did not survive the same illness, and once again, we counted our blessings. We watched Leo grow from his initial admission, bigger and stronger before our eyes, and yet at certain times he was so fragile. I couldn’t keep him in a bubble, and yet a simple childhood illness landed him in hospital for nearly a week. Having two children with diabetes and other health issues, I knew our family was more likely than others to spend time in the hospital.

Aside from emergency room visits, we have avoided hospital admissions for the past four years, and we hope to continue this trend. As we walked in “Go the Distance”, I felt grateful for a few things: It was fulfilling to support the hospital and moreover, I was happy to join my former colleagues and update them on my family since our last “visit”. Now we were also healthy and walking. Most importantly, I was able deflect the focus away from our own pervasive medical issues and genuinely celebrate with the “miracle children” who were the Walk marshals. It reminded me of why I became a pediatrician long before I was ready to start a family: I was passionate about caring for children. It is relatively easy to admire their spirit and resilience. Working with these young patients and their families—especially the sickest and most fragile—helped me in an important way. They helped prepare and encourage me to get through my own family’s medical challenges. It is to them and the lessons they taught me that I truly express my gratitude.