My son won’t have a normal start to life.
Minutes after leaving the womb, he’ll be whisked away to a
waiting ambulance that will transport his tiny, fragile body several blocks
away to one of the best children’s hospitals in the world. A spot in the
Neonatal Intensive Care Unit will be waiting.
There is a 70 percent chance he will need surgery
immediately. There is a 100 percent chance he will need a second surgery within
months.
And that is the best we can hope for.
I still am not to the point where I can say or write this
without tears welling up.
I won’t glaze your eyes with the medical jargon that even I
don’t understand. He is among the one percent of children who are born with
heart defects. In fact, the odds are much smaller than one percent on some his defects: hole in his heart, two valves coming from the same
spot and performing the same function, and narrowed arteries in two places.
My son is broken.
I ache for him to be fixed.
Doctors say it is possible. The surgery that is likely upon
the day he arrives in this world can fix the narrowed artery at the top of his
heart. The second surgery, which will definitely take place, will fix the hole
and the two valves.
The other narrowing, which they are monitoring, may not be
fixable. Brooke and I heard different things from the doctor. We were both so
stunned at the news, I’m not sure either of us heard anything completely right.
Brooke thinks it is fixable. This is one argument I hope she wins.
What I know for certain is he will spend many days in the
hospital and undergo at least one open-heart surgery. More days in the hospital
to recover, and possible follow-up surgeries. Then he will spend the rest of
his life being monitored by a cardiologist.
But, if everything goes right, if the fixes take and the
other narrowed artery heals, he could be a fairly normal kid.
I’ll take it. I’d love if he is able to play competitive
sports and run freely, without a care, with his dog and neighborhood friends.
But mostly, I want him to be alive and healthy enough to have
a decent quality of life.
I was angry when we got the news. I’ve spent many days since
telling myself what a good life I have.
I grew up poor, but loved. And being poor was a positive. It
sharpened me, made me a fighter. I would not be the person I am, or achieved
what I have, without that foundation.
I had more fun in my 20s and 30s than the law should permit.
In my 40s, I met and married a beautiful woman with a heart so tender saints move
aside for her. Seventeen months ago, I was blessed with the best thing to ever
happen to me, a beautiful daughter who is smarter than her age and as
fun-loving as they come.
No one I have ever been close to has been murdered or died
tragically young. I’ve lost grandparents
to debilitating diseases, but only after they’d lived long lives and showered
me with love. I lost my dad to leukemia, but I had him with me into his 60s.
As a poker player, I understand skill is trumped by luck.
Sometimes the odds are against you. This is simply my time for bad luck. I’ve
had my good streak; now I have a challenge to overcome.
Or it could be karma. Lord knows I have done enough bad
things and hurt more than a few people in my life.
But what about my wife, a special education teacher who
takes care of the world’s most vulnerable? A selfless woman who lifts up
everyone around her?
She doesn’t deserve this bullshit.
Neither does my innocent little son, who will be only
minutes into this world when faced with life-or-death situations.
Fuck you, karma.
I don’t know if I am a good dad. I try my best, but without
my wife to prop me up, I’d probably be lost. I’m better than my dad, but I am
nowhere near the super dads I know, like my brother or a stay-at-home friend,
Rory Glynn.
But I know I am a LOVING dad. If love were water, a titanic
swell would swallow Sydney daily.
If love can get us through, that little boy has a really
good chance.
I’m glad Sydney is not old enough to know what is going on.
A time that should be joyous and full of anticipation has turned to depression
and nervousness.
I’m not an optimist or a pessimist. I am a realist. That
means I study the situation, understand the odds and outcomes, hope for the
best and prepare for the worst.
We all know what the worst is here. I’ll be prepared.
My wife is another story. Being prepared is cheating on the
notion that our little boy will be anything but fine. Mothers don’t cheat their
kids.
I’m worried about her. Her heart will break when they whisk
that boy blocks away to Cincinnati Children’s Hospital Medical Center. She has
to stay behind for three days, recovering from a C-section. She won’t be there
for that first surgery, if needed. Normal breast feeding and bonding will be
difficult.
There will be two people in this family with broken hearts.
No, make that three.
Brother he is not broken. And neither are you. You need anything, anything at all you call text hell yell real loud. We are here for you..
ReplyDeleteOur prayers
Eric Tanya and the boys
My heart is hurting for all of yours. Have faith, hang in there. If your boy is anything like you, he will fight through this, too! We are here if you need us.
ReplyDeleteBrian, I'm friends with your cousin, Amanda. I believe we met at her wedding. Please don't give up faith. My youngest was born with 3 major congential heart defects. She has had 3 open heart surgeries and on February 1st, turned three years old. Email me if you want to talk or discuss anything. But please don't give up hope. Get 2nd or even 3rd opinions if you don't necessarily like what you are hearing. Don't let anyone take away your hope or faith. I don't know much about the hospital in Cincinnati but if you don't feel you are getting the right care, send all of the initial files and such to the childrens hospital in Philadelphia or Boston. I know they are some of the top 2 hospitals for pediatric cardiology. I'm here for whatever information, advice, experience I can give you.
ReplyDeleteThank you Meredith. I have asked my cousin for your email address. We would love to get insight on what to expect and how we might cope.
ReplyDeleteCincinnati Children's has a good reputation here, but I did check out the national rankings and theist recent US News has them a close third behind Boston and Philadelphia and in the top 8 for cardiology. I am confident we will get good care there.
As you know, we are grappling with something we never expected. I look forward to connecting with you and getting any pointers that can help us. Thanks.
Sounds great! I'll give you whatever insight I can. I'll wait for your email!
ReplyDelete