Even if you know bad news is coming, when it is about your children, it slams your gut like a Mike Tyson uppercut.
We knew going into yesterday’s six-month checkup it was
likely doctors would determine Tyson needed another open-heart surgery. Still,
hearing the words made me instantly sick to my stomach.
And, to make it worse, the doctor stressed that even with successful
surgery, Tyson might have to live the rest of his life with a pacemaker.
I’m angry at the world today.
My precious 2 ½-year-old son, a shy, sweet boy who enjoys
counting and weekend sleepovers in his sister’s room, doesn’t deserve the havoc
wreaked on his life by the randomness of a congenital heart defect.
I should count my blessings. I have a wonderful wife and two
smart, adorable children. I could not have asked for a better mate and mother.
My daughter is a spitfire of a 4-year-old, a smart and sassy diva always
searching for an audience for her latest song, story or other imaginative
theater. My son is a reserved, introspective child who can play by himself for
hours, content in solving a puzzle or organizing and counting his toys.
My wife and I both have good, fairly secure jobs. Six months
ago, we bought our dream home.
I came to this wonderful life late, and it is truly more
than I deserve given my youthful transgressions.
I also know there are millions of parents around the world,
and many we personally know, who would rip out their own heart if it gave their
child a shot at an operation that would allow them to live a “normal” life. We are reminded of this every time we visit
Children’s Hospital.
I know I should be grateful. But dammit, I am angry.
I don’t want my son on that operating table again.
I don’t want his life hanging in the balance again.
We have been through
this before. For those who don’t know, my son was born with Double
Outlet, Right Ventricle. To simplify, the anatomy of his heart wasn’t
right. He had to be delivered at a hospital close to Children’s Hospital – with
a team of emergency medical personnel on hand – so he could quickly be whisked
away to the hospital’s cardiac unit.
He spent a few weeks there and eventually went home to get
stronger, so he could prepare for his operation. We fed him through a tube that
went into his nose. Slated to undergo a corrective surgery at six months, he
couldn’t make it that long. He was two months old when they first opened up his
tiny chest.
He survived.
We continued to feed him through a tube. Eventually, he
gained enough weight to make it onto the growth chart. The tube came out. He continues
to eat pretty well. At last measure, he was in the fourth percentile for weight!
We take all the milestones we can get.
Other than the jagged scar on his chest, you would never
know he has issues. He plays like any other 2 year old. He is small for his
age. His speech is a little behind. But honestly, you would never know.
He has come a long way. He is a fighter.
For the rest of his life, he will have regular cardiac
checkups. At his checkup last May, they told us that the natural hole in his
heart – something they would normally want to close, but in his case they used to
route blood flow in the initial repair of his heart – was closing on its own.
Eventually, they said, he would probably need another operation. But it is
risky, so let’s wait as long as we can.
That wait lasted six months. He will have the surgery after
the holidays.
The added news is that the repair site is near the natural
electrical pathways of the heart. There is a chance that the “fix” will screw
with the pathways. If so, he will wear a pacemaker the rest of his life. They
will implant it near the bottom of his rib cage and, as he grows, move it to
his chest.
My wife asked the doctor how that would impact his life.
No contact sports. Other inconveniences. But a chance at a
full life.
It just adds to the list of our worries, which total three
big ones right now:
- His survival.
- The need for a pacemaker.
- The chance that these repair sites continue to close and he has to go through this every couple of years.
Our one saving grace: Cincinnati Children’s Hospital. The
third best children’s hospital in the nation.
He will have the same surgeon as last time. The gentle giant,
Roosevelt
Bryant III. He has already saved his life once. I know he’ll want to finish
the job.
Probably the hardest thing I have ever done in my life was
passing my little two-month old boy off for surgery two years ago, not knowing
if I would get him back.
Now I have to do it again.
We adults know life knocks you on your ass every now and
then. It is a shame my son has to learn it so often at such a young age.
My wife bought Tyson a t-shirt that says “Some Day, I Will Move
Mountains.”
It is my favorite shirt.
I hope he gets the chance.
