It's the babies who make me cry. Even now, 25 years after my own newborn was at Children's National Medical Center, I can't see those tiny babies in incubators, hooked up to those machines, tubes coming out of every part of their bodies, without breaking down.
I went to Children's last week to see the new wing, an amazing place, years in the planning, that incorporated all of the ideas and suggestions that I and so many parents had contributed out of our experiences there.
I'm always determined to hold it together when I go there. I don't think it's a good idea to have a member of the board wandering up and down the halls weeping. And yet, last week, when I visited again and saw those children, their chests heaving slightly, struggling to breath, their hands curled up into little fists, their heads covered with miniature ski caps and even some with tiny sunglasses to keep the lights out of their eyes, I could barely contain myself. It's even harder when the parents are there. You see them hanging over the cribs, desperately trying to make some kind of physical contact with these precious creatures, the anxiety, fear and pain etched on their faces. They stare nervously at the heart monitor, jumping every time it emits a strange beep, hoping that it isn't a bad sign.
I know. I've been there. When my son, my only child, was born he had a leak in his heart. Eight weeks later he went into heart failure. For the next two months they tried to keep him alive and finally performed open heart surgery when it looked as if that were the only option. We had called experts from all over the country for advice. Stay where you are, they all advised. It's the best place you can possibly be. And so we did. For two months I lived in Children's hospital in Quinn's room with a bed and bath provided for all of the parents.
I never left him alone except for meals when my mother would come to watch over him. The night before his surgery he wasn't allowed to eat after midnight. I had been nursing him and every time I tried to hold him he would cry out in hunger. It was excruciating, knowing he might not survive, letting him lie alone or be held by one of the nurses.
I don't think I have ever felt such desperation as when we took him down to the surgical suite the next morning and handed him over to the anesthesiologist. I completely fell apart, slumping to the floor in tears. We both knew he had about a 50-50 chance of making it. My husband Ben tried to cheer me up. "Just think," he said, "now he'll never have to go to war."
Happily, after an eight-hour surgery, Quinn survived and is now a happy, healthy and thriving 25-year-old. But it has been a long haul. He was beset by so many medical problems and had so many difficult kinds of surgery over the next 16 years that the two of us practically lived at Children's Hospital.
What would we have done without it? I can't begin to imagine. The exceptional care and caring, the devotion, excellence and expertise of the medical staff, and the brilliant approach to taking care of the whole family, not just the child, were unique. Despite the pain and the despair and the fear I felt during all of those years, I always had the feeling that not just Quinn but my husband and I were also being cared for as well. It gave us an enormous sense of security.
We were the lucky ones. So many parents come from far away, from all over the country and all over the world to be cared for at Children's. So many disadvantaged children come from the region, taken care of despite their ability to pay.
There were single mothers who had other children and jobs who were unable to visit their children often. There were parents who had to move to Washington or divide their families so their children could be cared for here. Often, when my mother was at the hospital with me, I would go from room to room and just hold the babies or play with the children whose mothers couldn't be with them, for days or even weeks at a time.
The nurses were wonderful, understanding the need for a child to be touched and hugged and loved. There is a chapel there, too, a serene place where, though I was not a believer, I found a certain sense of peace in my most desperate hours.
Today, the hospital has grown considerably, with a research center and new specialty ICUs, and a growing faculty of superstars from around the country. The rooms are fabulous, with views of the city and large beds and private baths and playrooms and internet hookups and family lounges and waiting rooms.
These things are all terrific. But the most important thing about Children's is the sense of security and safety you have from the minute you walk through those doors. For me it really is like being home.
We saw our share of tragedy there. Not everyone can be saved. The child of one of our closest friends died after undergoing surgery following a car accident. The child was admitted just as we were in the surgical suite for yet another time about to hand Quinn over to the doctors. There were children who were terribly burned, those who had cystic fibrosis, and many who had cancer. Children's is where you go, not just for prevention but for the most difficult cases as well.
For this reason, every time I went to Children's and even now I am conflicted. So many times I went feeling sorry for myself, only to see other children in so much worse shape than mine that I could never really pity myself. Once when Quinn was terribly sick I had lost all hope until I got into the elevator and saw this emaciated child with a shaved head, being pushed in a wheelchair with an IV tube attached. He was laughing. How could I feel sad for myself? I thought and pulled it together, determined to stay upbeat and optimistic.
Before I had Quinn, I had absolutely no interest in Children's Hospital. I know so many people today who aren't interested. They have been blessed with children and families with good health. You never know, though, when disaster will strike. When it could be your child, your brother or sister or friend or even you who gets sick or injured. It will be then that you will realize how important it is to have an institution like Children's National Medical Center.
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Service to others is an important part of most faith traditions and on the minds of many of us at this time of year. On Faith is working with Causes, a popular social networking community on Facebook, to bring attention to important charities. As a first step, Jon Meacham and I have selected Children's National Medical Center to be one of 20 charities that Causes is showcasing during the holiday season. We encourage those of you who are Facebook members to add the Causes "application" to your profile pages if you haven't already, and then choose to contribute to Children's National Medical Center or share it with your Facebook friends. If you are not a Facebook member, you can join by browsing. You can also learn more about opportunities to contribute to the Center at the Children's Hospital Foundation web site.
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