Best Lines… “Your daughter needs open heart surgery.”

OK, this should actually go into the category of “Worst Lines,” but, fortunately, there haven’t been enough of those in my life to justify a category by that name (unless you survey all the women I’ve tried to pick up over the years).  Let me start at the end of the story.  Everything worked out just fine.  So, then, to the beginning…

I wrote some months ago about my daughter’s birth by emergency c-section.  Madeleine was full term, but only weighed in at four pounds, ten ounces.  We were told that she had “intrauterine growth retardation,” which basically means she was not receiving sufficient nutrition in utero.  (It does not mean that she is mentally retarded.  The fetus is smart enough to feed its brain first and fully, though that means there is even less left to go around for the rest of the body.) 

There is this hilarious picture of my wife and me bringing our daughter home from the hospital.  We are posed in front of our house, proudly holding Madeleine in her car seat.  You can barely see her in there.  Some years later, my mom confessed to being scared to hold our daughter, her first grandchild, because she was so tiny. 

Despite all of the early drama, everything was proceeding normally for the first few weeks.  Madeleine wasn’t eating much and wasn’t sleeping well, but nothing that seemed all that extraordinary for first-time parents to deal with.  Then my wife took Madeleine to the pediatrician for her one-month check-up.  She called me in tears to say that the doctor had picked up a heart murmur and had sent them immediately to a pediatric cardiologist at Overlook Hospital, near our home. 

I was working in New York City at the time, more than an hour from the hospital.  My secretary ordered me a car service to speed my trip.  The driver was a Russian fellow, maybe 50 years old.  He asked me where we were headed, and I told him and then told him why in the way that people share very significant things with complete strangers.  He said he had teenage girls and that being a parent could be hard.  “It will work out,” he said and it brought me an odd measure of comfort.

By the time I got to the hospital, the doctor was already doing an ultrasound on Madeleine’s heart.  He provided no running commentary about what we were seeing on the monitor.  Holy shit, I thought, that’s my daughter’s HEART we’re looking at.  The doctor finished the exam and brought us into his office.

Madeleine had four holes between the chambers of her heart, he told us.  Rather than flowing efficiently from chamber to chamber, some of her blood was, in layman’s terms, leaking back and forth between the chambers.  Kids with this condition are often very small and sluggish.  Their hearts must work extra hard to get the right amount of blood pumping through their bodies.  As a result, they burn a lot of calories and they’re always tired because, even at rest, their hearts are working overtime.  Madeleine wasn’t in immediate danger, the doctor said, but her heart WOULD need to be repaired at some point and the repair would need to be done via open heart surgery.

Open WHAT?

My wife recalls it as the single worst moment in her life.  I felt like Wile E. Coyoterunning off a cliff.  For a few seconds, you keep running, not realizing there isn’t ground under you anymore.  Then you look down.  Then you look helplessly straight ahead.  Then you fall, with your eyebrows perhaps staying suspended in middair for a few more seconds before plummenting to the ground with the rest of your body.

We waited until Madeleine was 13 months old before going ahead with the surgery.  The man who did it, Dr. Jan Quaegebeur at Columbia Presbyterian Hospital in New York, is widely considered to be the best in his field and is known simply as “Q.”  We were warned ahead of time that his bedside manner might leave something to be desired.   We scheduled several meetings with him prior to the surgery and he canceled on us everytime.  “You’re not trying to make a friend,” a co-worker told me, whose own daughter’s heart had been repaired by Q.

We had two false starts leading up to the surgery.  The first time it was scheduled, our daughter came down with a cold and the surgery was canceled.  The second time, my wife and I had on our surgical scrubs and were minutes away from bringing Madeleine into the operating room when there was a sudden flurry of activity on the ward.  “A heart has just become available,” one of the nurses said to us as she hurried by.  “We’re going to do a transplant.  You should probably just go home.”  (The child who received the heart was only a few weeks old and occupied the bed next to Madeleine’s in the ICU.  He was still there when we left.  As I recall, we either bought him a balloon when we left or gave him Madeleine’s balloons.)

The third time’s a charm, as they say, and it was for us.  My wife and I brought Madeleine into the operating room.  There were lots of people and lots of machines.  I laid Madeleine down on the operating table and gave her a kiss.  She started to cry as they put the mask over her face.  She fell asleep almost immediately. 

“OK, Mom and Dad,” someone said.  “Don’t touch anything on your way out.”

A few hours later, Q walked up to us in the waiting room.  “Everything went fine,” he said.  He’d repaired three of the four holes; the fourth wasn’t big enough to justify the effort.  We shook his hand and he walked away.  It was the first time we’d ever met him.

Young children recover from major surgery remarkably quickly.  Within a day, Madeleine came off the ventilator.  Another day passed and she was sitting up in bed.  By the third day, she was up and about, playing with toys in the hospital playroom. 

We desperately wanted to go home.  I was terrified that something awful was going to happen to Madeleine in the hospital, that she would get an infection or something and everything would come crashing down. 

There’s that great scene in “Jaws” where Quint, played by Robert Shaw, tells Roy Scheider and Richard Dreyfuss about being one of the crew of the USS Indianapolis, the boat that delivered the A-bomb, but was then sunk by a torpedo.  Nine hundred men went into the water and nearly 600 were killed by sharks over the next five days before another ship arrived on the scene.  Quint says it was THEN that he was the most scared, waiting his turn to be plucked out of the water, and that’s just what it felt like.  Madeleine had survived open heart surgery, now let’s GET THE FUCK OUT OF HERE.

We went home on the fifth day after surgery.  As we walked down 165th Street toward the parking lot, I let out a triumphant yell.  We made it.

Today, Madeleine is a healthy and happy seven year old.  You can still see a thin scar about three inches long running down her chest — her “zipper” as we called it when she was younger.  She doesn’t remember the surgery, of course, but we’ve talked to her about it a lot over the years.  We tell her that when the doctors fixed her heart, they put extra love in it.        

Tags: pediatric heart surgery, wile e coyote, uss indianapolis