Monday, November 23, 2009

Now whole, not hole

Now Whole, Not Hole
acrylic on paper, pastel on architect's vellum

I was four years old when I had my operation.  I had a hole in my heart, supposedly the size of a dime.  They sewed the hole up, but they had to cut my chest open and bend my ribs back.  Luckily, I was of course on some sort of drug, so I didn't have to feel the pain.  However, the operation left a scar on my chest, which has gradually faded away over the years, but still remains visible.  My Mom has some sort of odd fascination with scars and is in the process of drawing the picture that you are now viewing.
Andrew, 16

Andrew tells the story pretty accurately, if not with scientific details - the day after he was born, Paul (his Dad) and I took him to the pediatrician's for his check up.  The doctor, a kindly old man everyone would want for a pediatrician, said he could hear a heart murmur in Andrew's chest.  He said it very calmly as if it were the most natural thing in the world, so I didn't worry about it.  I asked what we should do about it.  He said we should get it checked out every so often and at some point might want to have it operated on. 

When we moved to Richmond a few weeks later, we found a doctor who also recommended we keep an eye on it and sent us to a pediatric heart specialist, Dr. Bill Moskowitz.  He was wonderfully kind and helpful the 2-3 times we saw him.  In the meantime, I had no idea if this was a big deal or not, and I was having babies and working and doing life with kids.  When Andrew was 4 and Laura was closing in on 2 and I was pregnant with Dylan, we went for the regular check up to Dr. Moskowitz.  He recommended that Andrew have an operation.  I couldn't see how that was necessary - he was fine.  He recommended that we have a sonogram done.  I told him that I wasn't willing to because it would cost us $500 and we didn't have that kind of money to spend on a stupid test.  He asserted that he needed to see the size of the murmur, etc.  By this time I'd begun to realize that "murmur" is another word for "hole."  A hold in my child's heart.  THAT was probably a big deal.  Dr. Moskowitz was so kind.  He told me not to worry about it, and did the sonogram anyway.  He set up a TV for Andrew to watch cartoons while he did a sonogram similar to what they do on pregnant bellies.  He showed me Andrew's heart.  What a miracle.  Then he showed me where there was a hole between the atria of his heart.  ONE INCH BIG.  In a heart the size of a 3-year-old's fist.  That caught my attention.  I asked what sort of problems it would/could cause/was causing.  He said that it was making Andrew have less endurance than normal for his age.  He said further that as Andrew aged, his heart and lungs would have to work much harder to move oxygenated blood in the right direction and that his lungs would develop too much muscle tissue and that his heart would eventually give out, causing him to turn blue and die around age 36.  With the operation, he would be completely healed.  Immediately.

I asked how soon he could operate.  I had had no idea the severity of the problem.  I'm thankful for that really, because I would have treated Andrew differently, probably in ways that would have stunted his growth. 

The operation was on August 30, 1991, the day before Laura turned 2.  She stayed at home with a dear friend, Elisabeth, while Paul, Mom, Dad and I went MCV to wait.  We were with Andrew when they wheeled him into the operating room.  He was cheerful and playful.  There were about 20 people with us in the waiting room and 100's of people praying for us in the various faith communities our family members were part of.  I could feel the love pouring in.  That was the best part of all of this.  So many people gathered to help us, to offer physcial or at least emotional support.  So many prayers were lifted up.  I strongly believe in the miracle of prayer ever since then.  Andrew received so many cards and gifts, it was amazing!  Much better than Christmas and birthday all rolled into one!

Dr. Moskowitz had three heart surgeries that day.  One was on an infant who was unlikely to live.  Another one was quite serious but likely to have a good outcome.  He said that Andrew's was quite simple - "a bread and butter operation."  I told him it might be HIS bread and butter, but it was terrifying to us.  Later when I saw the baby in ICU, I could better understand the severity of its needs.

After a few hours we were called into the ICU where Dr. Moskowitz told us the operation had gone perfectly.  They had cut open his ribs, pried them open, then put him on a heart and lung machine so his heart wouldn't have to pump.  Then they went into the heart and sewed up the hole then sewed up the heart, stapled together his ribs, re-fastened whatever muscles or flesh there was, sewed up the skin, and voila, he was done!  (I don't think that description would pass for a medical training manual, but I'm sure you get the idea!) 

We walked into the ICU.  Andrew was lying on a huge hospital bed, pale, skinny, naked from head to toe with no covering because he kept kicking it off.  He was unconscious and had tubes coming out of most of his orifices - oxygen into his nose, drainage tubes into his chest, IV into his wrist, catheter into his penis, oxygen meter on his finger.  He was strapped down so he wouldn't disturb any of the aparatuses.  My heart cracked in to seeing him lying there so helpless and frail and at the mercy of technology.

He came to and immediately wanted water.  He was parched.  All we could do was give him foam soaked in water to suck on.  It didn't satisfy him at all and he flailed and fussed and whined and complained.   A few hours later he was unhooked from some of the tubes and was told he needed to walk in order to get everything going again.  I was stunned that they made him walk already.  The next morning he was in a regular room.  2 days later he was sent home.  3 days later he was actually RUNNING around the backyard!  Faster than he ever had before.  I had had no idea that he would get out of breath because of his heart murmur.  He used to run 25 yards then say, "I'm so tired!"  I thought he was a bit of a whimp.  Now, though, he had so much energy and was running all around, ready to play anything!  It was a miraculous transformation.  Stunning.  100 years ago he would have led an increasingly sedentary life and would have died a slow death.  Now, instead, in 3 days he was completely healed except for his scar which healed quickly as well.  No repercussions, no nothing.

Today, the operation would be much less grueling.  Now they can insert a tube which has a camera and clamshell clamp into the patient's upper thigh, have it wend its way up to the heart, then use the clamp to close the hole successfully, then come back out with no other interference at all.  Amazing!  I am so thankful for modern medicine.  And for the doctors who have saved the lives of my two sons.  It is humbling to think of all the sadness I would have experienced had it not been for these miraculous operations.

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