Stories of hope

It was April 13, 2007, in the early morning hours.  I had taken my eight-year-old daughter Sophie to the emergency room.  We had just returned from visiting family in Savannah, Georgia.  Sophie had been sick and had trouble sleeping the last couple days of our trip, and she had gotten sick a couple of times on the long car ride home.  We decided to take her to the emergency room rather than wait until morning.  I expected a usual long wait and thought that we would hear that the thick Savannah air had aggravated an asthma condition we didn’t know about.

But that it wasn’t asthma.  I called my husband, Jim, at about 2 AM with shocking news: Sophie was suffering from congestive heart failure.  Within a few hours, we learned that she had viral myocarditis.  Her heart was swollen.

Sometime in the previous couple of months, a common virus – it could have been a cold, the flu, anything – had settled in her heart.  In fighting off the virus, her immune system was damaging her heart.  We were told the statistics – in a third of patients, there is total recovery, a third suffer heart damage that’s treatable through medication, and a third don’t make it, or need a heart transplant.  We didn’t want to think about that last third.

As that first day wore on, things got progressively worse.  They tried medication, they tried an oxygen mask.  But Sophie couldn’t breathe.  She would have to be put on a ventilator.  Deep into that next night, she crashed.  She would have to go on a heart lung machine.  More statistics: only 40 percent of children who go on a heart-lung machine survive.  A nurse knew a priest who lived nearby – she called him to administer last rites.  Not three days before, she had been sprinting up and down the beach.

The next morning the strategy changed.  She would be put on a different machine that would do the work of her left ventricle until her heart had an opportunity to heal.

She was on that machine for nearly five weeks, and we continued on a cycle of hopes raised and dashed.  Either my husband or I were with her 24 hours per day.  And we followed the many monitors, living and dying with each fluctuation.  We panicked each time the alarms went off, and they went off a lot, as her heart rhythms went haywire.  During that time she contracted pneumonia, E. coli, and had to have emergency surgery to control internal bleeding.  We never told her goodbye during all those episodes, but many times we told her how much we loved her, thinking it would our my last chance.

After five weeks, Sophie had to come off of the machine.  The risk of infection became too great, and the doctors needed to know whether her heart could work on its own.  Within a day, it became apparent that Sophie’s heart could not do its job.  The monitors we watched told the hard truth: Sophie would have to be listed for transplant.  What we had dreaded – that thing we didn’t want to think about – became our only hope.

As we filled out our paperwork, the prospect of transplant became real.  And we thought about the people who might become our donor family, and we cried.  We knew that somewhere, somebody with a desperately ill child would lose the one thing we were clinging to in our own despair: hope.  And that in that darkest of times they would find the grace to save us.  It was May 18^th.

Sophie was listed as 1A on the national transplant waiting list, which meant she was among the people most desperately in need for a heart.  We were told that the wait could be weeks or months.  We all knew she could not survive that long.  It’s the policy of the team at Nationwide Children’s Hospital to not tell recipient families when donation possibilities arise.  Only when compatibility is confirmed do we learn that a match has been made.  Sophie was listed for only five days when her cardiologist came into her room at 4:30 PM on May 23.  He said: “We have a heart.”

When you hear those words, there is no celebration.  There is relief, but most of all profound gratefulness to and sympathy for the donor and his or her family.  My husband called me at home to tell me the news.  I had been literally on my knees praying for Sophie when I picked up the phone.

Very early on the morning of May 24, 2007, an ambulance, its flashing lights on, quietly pulled up to the emergency room door at Children’s Hospital.  We knew that Dr. Phillips was inside, and he was bringing with him Sophie’s new heart.  He was delivering hope, our hope for having our family together again, our hope for our precious daughter to have a childhood.

By 6 AM, the surgery was complete.  Sophie was back in her room a few hours later.  Her vital signs were steady.  The alarms were silent.  At last, her recovery could begin.  Neurologists were afraid that six weeks basically comatose and with limited blood flow would leave her with nerve damage.  We thought she might be in a wheelchair for a year.  But with her new heart, she surprised them.  On June 28, she came home, and walked into her school that August.  Today, you wouldn’t know she had ever been sick.

When Sophie got home from the hospital, many of her schoolmates were waiting in the driveway, with friends and neighbors and family.  During our ordeal, we learned a lot about the goodness of most people.  One of the most meaningful things we learned is that people desperately want to help those in need.  We received months of prepared dinners, thousands of prayers, tons of well wishes.  Everyone wanted to know if there was anything they could do to help.  But when it came down to it, only one person could help Sophie.  Her donor.  And her donor’s family. Sophie’s donor is in our prayers every night and in our thoughts constantly.

Jim and I still cannot comprehend what we have been given: When we should be angry at Sophie, we laugh, when she says something funny, we cry.  When we see her shoot a basketball, play the clarinet, write in her journal, or punch her sister, we often just silently shake our heads, thinking about the miraculous gift someone bestowed on us.  The gift of life, in all its complicated beauty.