The Redefinition of Perfect

Posted by Dan Levy.

Max is never going to pitch a perfect game.

We learned that yesterday, along with about six billion other things that come with the knowledge that your son has a blood disorder. Max has hemophilia, which is an issue with how his blood clots. In short, it doesn’t — or at least not enough to actually stop any serious bleeding he may have. There’s amazing science going on in our bodies, and thankfully for us, we live within a half hour of one of the best children’s hospitals in the world. It shouldn’t have taken nine months to figure out that Max has hemophilia and it certainly shouldn’t have taken as many issues (we’ll get to that) to figure out that something wasn’t right.

Alas, nine months, four days and about 15 hours after our son was born, we found out he’s not perfect. Max has, as we commonly say to explain maladies, “something wrong with him.”

Your Baby Is Always The Perfect Baby

It’s hard to learn your kid isn’t perfect. Max isn’t perfect. And yes, I understand how obnoxious that sounds, but as a parent, you always think your kid is perfect. You always think that your kid is going to be the next great scientist or mathematician or left-handed fireballer. Your kid is always perfect, because, well, it’s your kid and why would you ever think otherwise?

Zoe is a perfect kid. Zoe slept through the night at an early age. She started talking so early that by 15 or 16 months you could have an actual substantive conversation with her. She very rarely cried. We thought Zoe was the perfect baby…until we met Max.

Max slept through the night within six weeks (and for parents out there, I’m not talking ‘through the night’ as in midnight to five in the morning. I’m talking 12 hour nights, plus three naps.) Max has the calmest demeanor in the world. We thought Zoe was a good baby, but Max just doesn’t let anything bother him. Max spent 12 hours in an emergency room hospital bed on Tuesday, waiting for a transfer from our local hospital to CHOP, and got no more than 30 minutes of sleep, thanks to the woman in the curtain next to us who felt the need to scream at her co-worker for five minutes before hanging up because she was at the ER with her son. JUST LET HER TALK, Cherise, so she can get off the damn phone.

Twelve hours with barely any nap and Max cried exactly once, for less than 30 seconds, before he found his thumb and calmed himself down, waiting for the next nurse to walk by so he could flash his smile and make her swoon.

Max is the perfect baby.

Of course, all that proud papa pablum leads us back to yesterday. Yesterday, when we learned that Max isn’t exactly perfect, but a redefinition of what perfect has to be from now on.

The Backstory

Before we get to the next 60 years, let’s talk about the last nine months and how we ended up in a bed at CHOP. Max got circumcised in the hospital, against my better judgement because with Max being just half-Jewish, I wanted to have a Brisening — A Snip, A Dip, Let’s Have Cold Cuts.

I was going to get t-shirts made.

Instead, my wife’s OB, who moonlights as a mohel, did the snip in the hospital. When Max got back from the procedure, he was bleeding, a normal occurrence for a baby who just had his wiener chopped. A few hours later, he was still bleeding. Nothing to worry about, said our ancient and totally overwhelmed maternity nurse. A few more hours, still a significant amount of blood.

I had to wait until our nurse went off shift to get another nurse to call the doctor to come look at Max. They immediately called our doctor who examined him and realized that he had a “nick” from the circumcision that needed to be fixed.

So they fixed him up. But when the surgicel slid around because of all the ointment underneath, it leaked again, making this two procedures to fix the original procedure, all while still in the hospital.

“It’s nothing to worry about. Happens more than you’d think,” we were told. Great. We should have done the Brisening.

We had explicit instructions on how to care for his wound and when we took him home we did everything exactly how we were told. Of course, it started bleeding again a few days later, which gave us another trip back to the ER. I vividly remember driving to the hospital with a tiny newborn baby, navigating through suburban traffic while my head is screaming “my son’s penis won’t stop bleeding” over and over. That is not something you want your head to be screaming.

If this were a toe, we’d just rub some dirt on it, right? Right. After weeks of dealing with the healing and re-healing process, Max was finally good to go without ointments or gauze or dirt or anything other than what a normal baby should need.

Then, something looked weird. It looked like he had an infection. The thing just…grew. Turns out, when he started to put on weight, he got a few extra rolls. Our OB, who moonlights as a mohel, didn’t take enough skin off and after several doctors visits and a trip to a children’s urologist, we found out Max would need a circumcision revision.

Not again. NOT. A. GAIN.

It was our decision and it wasn’t easy to make, but I didn’t want the kid to get made fun of because his wiener looked different than the other kids. I didn’t want a 15-year old boy coming home pissed off at his dad because the girl he’s dating told everyone in school that he looks “weird down there.” I wanted him to be perfect.

Revisionist History

Max had the circumcision revision just about two weeks ago and everything was fine. He had a few stitches, but other than that, it was like nothing happened. He was completely unaffected by the surgery and was back to his normal smiling self within hours. He barely even seemed fazed by going under general anesthesia.

Four days later, after his first tub soak, he started leaking a little blood. Spotting is normal, we were told. Then he woke up with a diaper full of blood the next day and we called an ambulance. We were snowed in, so even if we wanted to drive him to the hospital, we weren’t able to. The ambulance took him to the ER and the urologist came and performed a procedure to fix it up again. Done and done.

Four hours later, he had another diaper full of blood. This time, we were able to drive and took him straight to the doctor’s office where he was given two more stitches to stop the bleeding. At this point, we thought something had to be wrong with him. We got a number for a hematologist.

Tuesday, Bloody Tuesday

Before we could call to schedule an appointment on Tuesday with the hematologist, Max woke up with too much blood in his diaper again. He had been checked out on Friday (after his Wednesday stitches) and was healthy and ready to resume regular activity with tub soaks and “vigorous” cleaning. Tuesday, after a weekend full of spotting, there was more than just spotting, so we called the urologist who told us to go to the ER (again, snowstorm) and figure out a plan from there.

Twelve hours later…

The wife went with Max to CHOP on Tuesday night and got him settled in while some of the best hematologists in the country drew vial after vial of blood to run test after test to figure out what was wrong with him. Of course, Zoe had to come home from school on Tuesday with a fever, so with her baby brother in the hospital, I drew the older kid stick — with help from both grandmothers in case they are reading this — to make sure Zoe was okay.

Perfection, Perspective

When your kid is in CHOP because he won’t stop bleeding, you worry. When his PTT levels come back high and the doctors all think it might be a disorder called Von Willebrand’s Disease you think back through your family history to look for signs this could be hereditary. By week’s end, my head created a family tree of undiagnosed disorders.

After getting Zoe up yesterday I “rushed” to CHOP to help with Max, as the wife got maybe two hours of sleep the entire night dealing with doctors and nurses and a roommate whose family had the TV on until 3 a.m. which was super nice of them. I use the term rushed loosely because the bridge was backed up all the way into Jersey, meaning a quick 25 minute drive after rush-hour took me more than an hour.

When I got to CHOP, it’s like it’s own city. Of course, I was sent to the wrong building at first before eventually navigating my way to Max’s room. When you walk into CHOP, you see a lot. You see kids with Cystic Fibrosis struggling to get to the elevator. You see an ocean of tiny bald heads heading to oncology appointments. You see kids randomly wearing helmets. You see a teenage mom sharing a room with your son, young enough to be a patient at CHOP herself, dealing with a toddler who has sickle cell anemia.

A simple walk from a parking garage to a hospital bed makes you realize that a bloody penis may not be the worst thing in the world and while you struggle to come to grips with the idea that your son isn’t, in fact, perfect, his situation is far less dire than others.

Then you realize none of that matters and it’s okay to be selfish. It’s your son. There is no guilt, just concern.

Max Factor 8

Human blood has something called factors that helps clotting. In short, we have platelets that act as “bricks” to stop bleeding, then a series of 13 factors that act as the “mortar” to make sure that bleeding totally stops and the wound stays shut. The average person has at least 50% of each factor, which is plenty to heal most wounds. Max has 2% of Factor 8, meaning that his body is unable to produce enough of that Factor to have the chain continue to Factor 9, then Factor 10 and so on. The next factor can’t work unless the previous works as well, so while his platelets have been doing their job, he continues to bleed because his mortar isn’t keeping the bricks in place.

For those who don’t know anything about hemophilia — and I was one of them until yesterday — it’s important to know how important the 2% Max has of Factor 8. If he was at zero, he could need monthly, weekly or even daily injections to try and get him over 1% so he doesn’t randomly start bleeding, even internally. With 2%, Max should only need a dose of Factor 8 before surgery, or before having a tooth pulled or if he got in a serious accident that involved a fair amount of bleeding. At first blush, this isn’t so bad.

Hemophilia, or at least the kind Max has, is entirely manageable. After getting sacked with the news that this is what he has — all the time looking at signs on my family tree, by the way, were for naught as hemophilia is usually inherited from the mother’s side as it’s a deficiency with the X chromosome — we spent the rest of the day talking with doctors and nurses about what he can’t and can’t do. He’ll certainly live a full and, likely, healthy life. He may not be perfect, but he’s still pretty damn close.

Helmets, But No Football

The doctors do a great job of not throwing six million things at you at once, so at first, it’s not a terrible thing to hear that he’s got issues, but his issues are things we can handle.

Then, as a dad, your heart sinks when you find out that contact sports are out. No football for Max. No hockey or boxing or wrestling, either. I’ll never forget the moment in my life when I sat in a hospital room with my nine-month old son, negotiating with his doctor whether or not soccer is a contact sport.

That’s why you have kids, right? You have kids to share the things you love and to teach them what you know in hopes they end up better at them than you. I’m Zoe’s soccer coach and I fully expect her to be the next Mia Hamm, with Max following closely behind as the next great United States goal-scoring threat.

Max may be allowed to play soccer, but he won’t ever be allowed to head the ball. In fact, he was fitted with a helmet yesterday, something he’ll have to wear until he’s able to walk without bumping his head into everything. Nothing, for a hemophiliac, is more dangerous than bleeding in the brain.

Maybe he can play basketball, we were told. Maybe. But he can definitely swim or play tennis or golf or even baseball, as long as he’s not a pitcher.

There goes the dream of a perfect game.

A pitcher puts so much stress on his joints that people with hemophilia can’t play the position. Other than bleeding in the head, the second most serious issue — and most common — is bleeding in the joints. Pitching, as most sports fans know, is a violent act to subject the body to, something far too severe for Max to ever be able to do at a competitive (or even more than a backyard) level.

The Bubble Boy

The hardest thing in all of this is figuring what you do next, now that Max is starting to get to the stage that he’s mobile. Do we coat our house in bubble wrap? Do we cover him in it? The nurses want us to have him wear the helmet every day, now that he can throw his head back for fun and now that he’s starting to crawl around (albeit in circles or backwards). The doctors think we can wait until he’s far more mobile to worry about the helmet but eventually his “hat” will be part of everyday life.

They promise he won’t need it when he goes to kindergarden (or, I hope nursery school) but what about everything else? How different will he be from the other kids? He’ll need a medic alert bracelet when he’s older, but how much do we have to explain to other parents when we drop him off for play dates in a few years? Can we do that without staying there? Will we have to watch every move he makes until he is old enough to realize what he has? Boys love to ram their heads into things. Max cannot do that. Boys love to jump off stuff. Max cannot do that.

By nature, we’re overprotective parents, so how do we get out of our own way and let him be normal?

Just…Perfect

We have the sweetest nine month old boy in the world and I’m freaking out about what’s going to happen when he’s 15 and his friends want to go cliff jumping. Heck, I’m worried about smacking his head into a coffee table later today. I think I’m just…worried.

But that’s life. You freak out, then realize that things are hopefully never as hard as the piles and piles of information tells you it might be.

Life is not perfect. And as much as you always think your kids are perfect, they aren’t either. Or, maybe, they are. Maybe life is just a matter of finding a balance and creating a new definition of perfection.

Posted on January 20, 2011 at 10:00AM

This Post tags: Hemophilia, Max, Perfect Game, soapbox

 

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1. Ben

   
   01/20 2011

   Dan,

   Beautifully written post, and my heart goes out to you and your family today. As a parent of a 2.5-year old boy, you put into words so much of what I think about on a daily basis. I’m sure Max will inherit the courage and fortitude he needs to deal with this from his father.

2. Ty

   
   01/20 2011

   My wife and I have had our fingers crossed for Max, and the rest of your family. So much about your experiences with Zoe and Max and their personalities remind me of my oldest two, Aria and Dominic. Not to go all narcissist on you (thanks TK), but we had a scary moment with D when he was two; reading about Max reminded me so much of that.

   Dominic was extremely listless and lethargic, and kept complaining of pain in his neck. Eventually, to the ER (I can’t imagine being snowbound at that point, my goodness). After endless tests, they started thinking encephalitis/meningitis/some other neurological disorder. I remember having an out-of-body experience, like detaching and looking down on the situation, and thinking, “Is this the first day of the rest of his life? Is this the day I find out he’s going to be a special-needs kid forever? Is this how it happens?” IIRC, he was actually wearing his Tigers jersey, and D’s a lefty, too; I had the exact same thought as you–well, there goes his major-league pitching career.

   I don’t even remember how long it was, but eventually, he just . . . shook it off. We put on a Tigers game, and he slowly turned back into the human tornado he always is. One of the nurses who’d been with him throughout came in to announce they were changing shifts; she watched him bounce around for a few seconds and went, “Oh, is THIS his baseline?”

   They never found out what happened that day, and part of me has always feared some sort of relapse. I know the ending to our experience–an apparent return to normalcy–isn’t the same as yours, but then I don’t think I’d be dealing with yours nearly as well as you are. It sounds like you’re blessed with incredible perspective on this, and I’m sure it won’t be long before everything really does seem perfect again.

   Peace
   Ty

3. Rupesh Sharma

   
   01/20 2011

   Dan,

   Great article. You and your family are in my family’s thoughts.

   Rupe

4. Jack Pierce

   
   01/20 2011

   \Well-written and well told. In terms of your last thoughts, spot on. He will have an unbelievable life.

5. Gregg

   
   01/20 2011

   Dan…brilliantly written. Max and Zoe will be proud to call you dad. Laura has Von Willebrand’s and she has to get IV treatment before undergoing any procedure. Our thoughts are with you, Marissa and the kids as you learn all you can about this affliction and how best to prepare Max for dealing with it.

6. Nathan

   
   01/20 2011

   Dan,

   Well written story. As a father with a son recently diagnosed with Autism, there is nothing harder to accept that your child is medically imperfect. Spending time a children’s hospital makes you truly thankful for the ‘minor’ issues and pray for those who need more help.

   Keep the positive attitude. Find the new definition of perfect. Max will adjust and surprise you every day.

7. Greg Wyshynski

   
   01/20 2011

   As a new dad, this post impressed the hell out of me. Max is going to be a spectacular person because he has a spectacular role model with his head on straight.

8. David Alison

   
   01/20 2011

   A great and heartfelt read. Max is one lucky kid.

   –David

9. Andy

   
   01/20 2011

   Thanks for this, Dan; it’s moving and well-written. And best wishes to you and yours.

10. joe m

    
    01/20 2011

    Dan,

    My thoughts and prayers are with you and your family. Thanks for sharing as I am sure this was a tough piece to write. As the father of 3 girls under 3 I can only imagine what you are going through right now. We had to have one of my daughters blood drawn and it was really hard for us as it took the lab 3 times to do it. It was horrible. Max sounds like an amazing kid to be so strong through all of this. Good luck to you and your family.

11. Jay Marcus

    
    01/20 2011

    Dan,

    My heart goes out to you, esp. since we had our son. It’s hard to hold back the tears of what you have to go through and you wrote it very eloquently. May you and Max have the strength to overcome hemophilia and we’ll be thinking of you guys! All the best!

12. Randy K.

    
    01/20 2011

    Dan, thank you for sharing this (I found this through Jamie Mottram’s Facebook). I have a 10-month old daughter, and I have to say that I find your strength and composure extremely admirable. Thoughts are with you and your family as you go forward, but Max sounds like a lucky little guy to have you as a dad.

13. Rahul

    
    01/20 2011

    Amazingly written post. I don’t have kids, but I was captured by every single word written. I can’t imagine how it feels to be a parent let alone find out your child has a genetic disorder which will stop him from doing things. The way you wrote this with everything going on is wonderful.

    I’ve listened to the podcast for a couple years and only written in once or twice, but I feel compelled to comment on this.

    Max sounds great, but his dad sounds pretty great too.

14. Don

    
    01/20 2011

    Dan:
    We found out at six months our son had a brain stroke in uterus and had substantial damage. Over the years we were told he’d never live independently, never drive a car, struggle in school.He could not use his right hand and walked with a weak right leg gimp. One doctor suggested brain surgery to ‘block’ any possible strokes.
    Today he is 29, lives alone, works for a school district, drives a regular car and is totally independent.
    Doctors live off protocols and theories. Parents have an advantage– love and intuition. ALWAYS trust your intuition and take a doctor’s theories with healthy skepticism.
    Go get em—Max…

15. Bearcat

    
    01/20 2011

    Might be one of the best things you have ever written. Thanks for putting this up.

    Max will find a way to be fierce in this world.

16. Steve

    
    01/20 2011

    Dan, my son was born with no left hand.

    My first thought was: Won’t stop him from playing baseball. Look at Jim Abbott.

    My second thought was: aw dammit, wrong hand.

    We wrote about this for a mommyblog at http://alphamom.com/your-life/postpartum/grieving-perfection/ .

    Hang in there, and feel free to be annoyed when well-meaning people send you “Welcome to Holland.”

17. Uncle Steve

    
    01/20 2011

    What a geat read – unfortunatel, it takes a “tragedy” like this to bring it. Knowing you and Marissa and even Zoe, you guys will be able to deal with it. Keep positive! Max (the other one) and I have you in our hearts and prayers. Cant/t wait to see you guys again! Max is an amazing Son with amazing parents and an amazing sister.

18. dee

    
    01/20 2011

    Dan,
    we have never met but I know your mom Susan from years ago and knew your grandparents as well, Debbie Zaslow is my cousin too and she sent your blog to me.

    I was so moved by your sensitive writing and am sending you the warmest hug and sincerest wishes for a happy life with your obviously wonderful family, Your strength and resolve will hold you up on the tough days.

    Dee

19. On The DL With Dan Levy Ending In April - SportsNewser

    
    01/20 2011

    [...] is ending the podcast is to spend more time with his family, including his toddler Max, who has hemophilia. Plus, Levy admitted that he’s losing money by doing the [...]

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