Brown-Eyed Boy

23 Oct

Strange, the things we remember.

I can’t remember his name, 12 years later. But I can picture the huge brown eyes, the red hair that fell across into them, still waiting for its first haircut. He was about a year old, round-faced and robust looking if you could ignore the IV tubes and the oxygen cannula. His mother — young, unmarried, overwhelmed. I can’t picture her any more either. Forgive me. We had our own details to remember.

His glassed-in room in the Pediatric Intensive Care Unit was across the nurses’ station from our daughter’s. Heart patient, of course; that’s what the wing was for. A miserable fraternity we’d never asked to join. But we were going through initiation nonetheless. Psychological warfare in the waiting room, hazing by sleep deprivation and terror.

His mother and I would talk during the shift changes at 7 and 7, when doctors made rounds and we had to leave lest we overhear another child’s health details. As if we didn’t know them already. Bonds forge fast in a PICU waiting room.

So we learned them all, the defects that brought our children there. Tetralogy of Fallot, Ventricular Septal Defect, Transposition of the Great Arteries, Hypoplastic Left Heart Syndrome.

On the scale of “serious heart defects,” a ridiculous hierarchy, he had one of the easy ones: Ventricular Septal Defect, or a hole in the heart. One surgery, fix the hole, recover, go home. That’s how it’s supposed to happen.

I envied her, to be honest. Our daughter’s defect came with a lot of question marks. Secret meetings we couldn’t attend where doctors talked about treatment options and quality of life versus risk and gave her genetic tests to be sure she was worth the trouble. Of course, they didn’t say it like that. 

They wrapped explanations in gentle blankets of “we need a complete picture,” and “there could be complicating factors for long-term survival.” They whispered things like “palliative care.” Which sounds much kinder than “we could just keep her comfortable and let her die.”

And I understood those choices, I really did. But in the end, because our doctors wanted to save this blue-eyed girl, they chose the route that gave her the best chance. 

I never wondered then if the fact that my husband and I were both educated members of the media, and our daughter had double-coverage private insurance played a role. Twelve years ago, I just  thanked God for putting us in the right place, at the right time, with the right surgeon. I still do.

But this brown-eyed boy, and his young, single mother, had a different story. They had a managed care program with a reputation for stingy payout. So when the brown-eyed boy was born with a tiny hole in his heart, the insurance company said, “let’s wait it out.”

Sometimes, holes close on their own. That’s a lot cheaper. So they refused to approve surgery. And the young mother and the brown-eyed boy waited.

But the hole didn’t close. So finally, the insurance company relented, and scheduled surgery.

 You remember, right? Ventricular Septal Defect, or a hole in the heart. One surgery, fix the hole, recover, go home. That’s how it’s supposed to happen.

The problem is, the brown-eyed boy’s heart had to work much harder because of that hole. Overworked hearts get enlarged. The muscle walls get thick, more rigid. Sometimes, they’re not ready to start beating again after open-heart surgery. And so it was for the brown-eyed boy’s heart. It couldn’t find a rhythm and wouldn’t beat on its own.

Surgeons fought back with bypass machines, and medication, and everything they could. We were at one of the best hospitals in the world for babies with heart defects, and the fight was valiant. Helpless spectators, the mother and I sat in the waiting room during shift change and talked and prayed and hoped together that her brown-eyed boy would open his eyes again.

Then one day, she didn’t come to the waiting room. The delay had proved deadly. He was gone, and so was she.

I think of that brown-eyed boy a lot these days, as the health care reform debate dissolves into so much silliness and death panel discussions and screaming at town hall meetings.

But what I wonder, is what made my blue-eyed girl more valuable than that brown-eyed boy?

While she practices for Shakespeare plays, texts her friends and fights with her brother, what would he be doing? Suiting up in pads and helmet for football practice, writing a book report, refusing to pick up his room?

I can’t buy the argument that just because we were born into families that valued education, blessed with bright minds through genetics,  happened to have good insurance, our baby was worth more.

I hear the argument that quality health care is not a right, and I ask, “why can’t that change?” We used to say that about education. We used to say that about women voting. We used to say that slavery was an economic necessity that would bankrupt our country if we abolished it. We grew up. We made progress.

I’m not a politician or policy maker. But when I think of the brown-eyed boy, I wonder how many deadly delays it’s going to take.

17 Responses to “Brown-Eyed Boy”

  1. Bon October 23, 2009 at 12:02 pm #

    i read this and think, amen. but then, coming from the privileged position of a citizen in a country w/universal (or what some of your compatriots like to call socialist) healthcare, i’m utterly baffled by any other perspective on the subject.

    still, i’ve seldom read a more eloquent case. sigh.

  2. Tammy and Parker October 23, 2009 at 12:11 pm #

    I can so relate to your story.

    Except we are the parents of one not only with heart issues, but genetic issues as well.

    Our private insurance is about to run out.

    Medicaid won’t pay for the live saving medication. And we have no idea how we will either.

    And I can’t help but worry if the much talked about health care reform will be better than Medicaid, or will they cover even less?

    Blue eyed girls. Brown eyed boys. And boys and girls with extra chromosomes all deserve life and the very best medical care possible.

  3. Lee Dunkelberg October 23, 2009 at 12:14 pm #

    This story cuts to the heart and soul of the health care reform issue.
    Everyday people are dying because they don’t have enough money for care or the insurance wants to make more money off of denying care.
    Both reasons are wrong, and we should be ashamed our nation allows it.

  4. Allie October 23, 2009 at 12:38 pm #

    As a transplanted Canadian I have long tried to explain what this post explains so beautifully to my American husband . That it’s unfair and immoral the way this system works now.

  5. Deb Wilson October 23, 2009 at 2:02 pm #

    I often wonder about my blue eyed boy, what will become of him when he is too old to be under my healthcare. I pray he can get a good job that has awesome healthcare.

  6. bernicekearney October 23, 2009 at 3:08 pm #

    Oh, Dawn, your beautiful words cut to the core of the debate that has gotten so ugly in recent months.
    I think I will always be able to picture that brown-eyed-boy with the patch of red hair…
    and like others who have commented before me on this post, I will be thankful for the coverage I am privileged to have, and worry about my friends and family who aren’t as fortunate as I.

  7. Ed Harvey October 23, 2009 at 4:14 pm #

    God Bless you Dawn.

  8. Aunt Becky October 23, 2009 at 4:57 pm #

    Kills me. It just kills me.

  9. Amy October 23, 2009 at 7:01 pm #

    There are few words to explain the tragedy that is our healthcare system, and you found them. Thank you for sharing.

  10. Cindy October 24, 2009 at 10:22 am #

    Deb said it well. Our son just finished school and is trying to find a job. He is no longer covered under our insurance.

    He asked me the other day if he could go to the dentist. It broke my heart to tell him that he could, but he’d have to talk to them to see if he could work out some kind of deal, since he didn’t have coverage. He’s one of my “babies”, even though he’s 20. I can’t afford to pay his medical bills if he gets sick, and he currently has no health insurance.

    Please God keep him healthy always, and at least until he’s covered…

  11. RJ Flamingo October 25, 2009 at 5:34 pm #

    Amen, sister. Nothing describes the inequities better than real life. It’s unfortunate that those with political agendas and axes to grind seem to be in control of the “debate.”

  12. Quadelle October 26, 2009 at 8:17 am #

    Absolutely heartbreaking, and at the core of the issue.

    In Australia we have a system that is somewhere between the Canadian and American system. We’re currently on one salary, but we pay the high price of private health insurance because we’re worried about the high cost if we don’t.

  13. amber October 26, 2009 at 1:28 pm #

    That’s terrible. Awful. Heartbreaking. It makes me so angry at our government…and the morons who are so adverse to change.

    Thank you for such a beautiful post.

  14. Kami Lewis Levin October 28, 2009 at 12:13 pm #

    My heartstrings have been aptly tugged.

  15. Amy Lozano October 28, 2009 at 12:14 pm #

    you should really write a blog. oh, you do. 🙂 dang, girl. your words are like art – simple, yet complicated. easy on the eyes, tugging on the heart.

  16. Sandra October 28, 2009 at 12:19 pm #

    Dawn, I cannot imagine what anguish that little boy’s mother went through, or the anger that must result from that senseless, senseless argument that the free, unfettered marketplace will cure all ills. For all its problems and woes, I am so very grateful for our Canadian health care system, not least because no mother has to depend on the wisdom of bean counters to determine if her child will have the right to a chance at life.

  17. Cat Ben October 28, 2009 at 3:24 pm #

    I’m Canadian, and truly support the universal health care that we have. Unfortunately, it’s not utopian. This year a child died because the government, hospital, and her band argued about who would pay the bill–and that before the child was treated. She was “treaty”, and so she died because of red tape.

    True, we have now got a law that states the commonsense principle that people get treated and bills get figured out afterwards, but it’s too late for her.

    The horror I felt when I heard this story is something that you folks face all the time down there, and I just don’t understand why you don’t support universal health care. Why wouldn’t you want to know that anyone who was sick would be able to be treated? It doesn’t make sense to me NOT to want that. . . .

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