This weekend thousands of Penn State students will finish a year of work with a weekend of dancing. THON is the largest student-run charity in the world, and annually raises tens of millions of dollars to support families of children with pediatric cancer, helping to both cover their costs and advance research. While my children have thankfully not had to fight that battle, I have benefited from the work of THON. So, this is my letter of thanks.
A few years ago, I read a speech by Dennis Barry, President and CEO of Moses Cone Health System. At that time, he was being formally installed as chairman of the American Hospital Association. In his closing he quotes the author, John Gardner, who wrote, “What we have before us are some breathtaking opportunities disguised as insoluble problems.”
Let me tell you my story about insoluble problems. Not long after I started working at Penn State, my wife, Allison, and I decided to start a family. Unfortunately, it took us almost 6 years to accomplish that. But, at Christmas in 1995, we happily told my parents that we were expecting. The next few months were crazy, as we began planning the next part of our life. It became crazier when my father suffered a heart attack and died in March, never getting the chance to see my children. Six weeks later on a Monday night in May, less than a week before Mother’s Day, my wife and I went to our first childbirthing class, to prepare for our due date in July. Just 30 hours later, the world turned even more upside down, when my wife went into preterm labor.
We rushed to the hospital where the doctors and nurses first tried to stop her labor, and then, recognizing the futility, prepared for delivery. That evening, my daughter, Caroline, was born, weighing 4 pounds and 3 ounces. The nurses quickly rushed her away, and the doctor sat to talk with my wife and me. He explained that he wanted to prepare us because in the delivery room, he had noticed some congenital malformations, and saw that Caroline was quickly having trouble breathing. He indicated that we should expect her to need some care at the Neonatal Intensive Care Unit (NICU) in Hershey, and he had already called for the LifeLion helicopter.
We then all joined the nurses in the maternity unit, as we waited for the helicopter. The doctor and nurses were doing everything they could to help Caroline breath, but were not having great success. X-rays indicated that her right lung was not inflating, and they considered trying to operate before the flight to attempt to address a lung collapse. In the end, they decided to continue to provide ventilation support during the flight, and allow the Hershey NICU physicians to assess her condition. My wife and I gave Caroline a kiss, never knowing whether we would see her alive again, and watched the LifeLion depart.
While the hospital did final assessments on Allison, we waited to get word from Hershey Medical Center. Finally, around 2 AM, the NICU doctor called us. We were lucky that no effort was made to operate on Caroline’s collapsed lung, he told us. There was no lung. Caroline was born with only a single lung, and the operation to inflate the absent lung almost surely would have killed her. We asked the doctor what her chances for survival were. All he would say is that he thought we should try to get to Hershey as quickly as we could.
Following a nerve-wracking drive, we arrived at the Hershey NICU, received instructions on how to scrub our hands so that we could enter the unit, and a nurse escorted us back to Caroline’s “bed”. Her lung was so weak, she was hooked to a high frequency ventilator, pushes little pulses of air into multiple times per second. Her body shook with each pulse, but she knew little of this, as the doctors had sedated her heavily. They explained to us that the HFV system was the only way they were able to stabilize her oxygen levels until (and if) her lung could grow stronger. They ran through a list of other things they had found—a congenital malformation of her spine and ribs; a complete absence of any cardio-pulmonary system on her left side-no lung, no veins, no arteries; this was leading to pulmonary hypertension, because all of her blood flow was going to one lung, rather than being divided among two. They explained that it was not unusual for these things to be accompanied by other problems—poor kidney function, other organ malformations. That evening, we had Caroline baptized by the hospital chaplain.
The hours that followed were nerve-wracking. We sat quietly by Caroline’s side, watching the monitors tracking her oxygen levels, heart rate, and blood pressure. We watched nurses and doctors take hourly blood draws to assess her well-being. Every few hours a portable X-ray machine or other imaging device would be wheeled in to check for brain or chest bleeds.
Incredibly, miraculously, Caroline defied the odds. She survived that night, and the next one, and the next. On Sunday—Mother’s Day—when we walked into the NICU that morning, a little envelope was taped to her bed, addressed to “Mom”. The nurses had made card for my wife on her first Mother’s Day, using Caroline’s footprints and handprints to make a flower. Later that day, she was moved from her high frequency ventilator to a regular ventilator. In a week, she was on a simple canula for breathing support and able to drink from a bottle. In 2 weeks, she was able to breathe on her own. In a little over 3 weeks, we all came home. Today, she’s thinking about college, and Irish dancing, and becoming a writer.
Five years later, we were expecting again. Caroline was excited to be a big sister. Allison was being closely watched by her doctor as we watched the days inch closer to her due date in May. In mid-February, I took her in for a check-up. The doctor arrived and started to take her information—weight, pulse, blood pressure. Then, he took her blood pressure again. He excused himself, and a few seconds later a nurse came in and again took Allison’s blood pressure. She left and then returned with the doctor. He explained that Allison’s blood pressure was extremely high, a condition in pregnancy called preeclampsia. He was going to immediately admit her to the hospital, so we headed over there. Throughout the evening they tried and failed to control her BP. So, as the next day dawned, Allison received her own LifeLion flight, and I joined her later in the day at Hershey Medical Center.
Through the next few days, the doctors at Hershey tried their best, but again were unable to control Allison’s BP, so at 29 weeks in her pregnancy, our son, Connor, 2 pounds 6 ounces, was delivered by emergency C-section. The next week was a blur. I visited with Allison as her BP continued to spike levels near 200, and the doctors realized she had also developed pneumonia. I visited with Connor in the NICU, where the nurses had placed him in the same location where Caroline had been for luck.
Allison was finally discharged. Since Caroline was in pre-school 3 days a week, we spent the next several weeks commuting from Hershey. We’d pick her up from school, and drive to Hershey on Monday, where we’d stay at the Ronald McDonald House until Tuesday evening. Then we’d kiss Connor goodbye and drive to State College; we’d return to Hershey on Wednesday afternoon. Often while one of us visited with Connor, the other would go with Caroline to the Child Life area at the hospital. We watched Connor begin to do the things premature infants need to do—breathe on their own, eat, grow—to be able to go home. We also watched the setbacks, and stood in the hallway crying waiting for a nurse or doctor to come tell us whether the news was good or bad.
Again, we watched a miracle. And two months later, Connor came home. Today, he turns 13.
Less than a few decades before these stories happened, they were insoluble problems. Less than a few decades ago, there’s a very good chance I would be telling the story of how my daughter, my son, and my wife all died. The breathtaking opportunities my children and my family have before us is thanks to those who refused to believe that these problems cannot be solved–the doctors, nurses, and others have worked and supported the children and families who visit the Children’s Hospital at Hershey Medical Center.
I am forever thankful for their unflagging effort and for those who support them through THON. FTK.