I Don't Think My Son's PC is God (a long rant)
April 30, 1998

Dear Parents,

Do all of you dread visiting your child's PC as much as I do? Do you ever walk out the door with lead in your heart, even though you've had a "good" visit? Do you cry yourself to sleep at night although you know in your heart that you really couldn't ask for more?

Alex had a PC appointment yesterday. It was to be his last visit with this PC because we will be moving out of state. I had about half a dozen important questions I wanted to ask this doctor, for reassurance more than anything.

The visit began quite pleasantly with the doctor talking to Alex as he played. Although Alex adores his PC, during the last visit in October, Alex didn't say much at all. Yesterday Alex talked a lot and interacted nicely with the PC.

I held my breath as the PC reviewed the EKG. He said it didn't look any different than he expected. I wish I knew how to read those things. I've seen entire books dedicated to reading EKGs. I just want to know what a "normal one" for Alex looks like so I would know if I need to worry.

The x-rays hadn't been sent to him like they were supposed to so he asked me if I had any questions before he continued with the exam. I had my little green notebook ready and I started asking him questions.

I guess I asked the wrong questions.

I think that Alex is doing so great that I want confirmation from the "medical community" that they think he's doing great, too. I don't think my son's PC is God. Really I don't. I wish he were. I wish he could "fix" anything that might come up, but I know he can't.

What he said was that Alex was doing as well as could be expected considering the complex heart defect he has.

That's good, right? So why did I ask him for Alex's prognosis? This is the WRONG question to ask, folks. Don't do what I did.

Have you ever gotten the "crystal ball" speech? I hate that speech. I know these doctors don't have a crystal ball. I'm not stupid. I don't want him to tell me, "Well, you know, I think that on May 25, 2013 Alex is going to die of an arrhythmia peacefully in his sleep." I wouldn't believe him anyway!! I'd do everything in my power to prove the guy wrong anyway!

I told a friend of mine last night that Alex's visit went well, but I still don't feel all that great. She asked me what I wanted. What did I want that guy to say? I told her that I didn't want any guarantees that Alex would live to see his children grow up - but I really would love for someone to guarantee me that. Of course I want that for Alex. I want it for Joey, too. Nobody can guarantee me how long I'll have either of my precious sons. I know that.

After talking with Frank this morning (he had to go to work before I could tell him about the visit) I finally figured out what I really wanted.

I don't want any PC to tell me how many years Alex's heart will last. First of all, that's just not possible. It isn't. Next, even if this heart doesn't last forever, there's no telling if Alex won't get a transplant or a mechanical heart that will prolong his life. Lastly, no one can predict with 100% accuracy what new medical technology will be available when and if Alex ever does develop a problem. We might have the capability to take some of Alex's own cells and clone a perfectly healthy and functional heart for him. We might. No one knows.

I want to hear that the oldest living "Norwood" is only 17 and going strong and that Alex looks like he's headed in that direction. I want to hear this from a doctor because this is what I believe in my heart. I want a doctor to tell me that he's excited about Alex's progress and that he's hopeful he'll make medical history - because he already is.

I want to hear my son's PC say that every day is special and precious but not to dwell on that. Plan for the future. Look forward to the future. The future is ripe with possibilities!

I don't want to hear that Alex's heart may last 20 years or may not. May last 40 years or may not. I know that. Really, I do. When I asked about prognosis - that's not the information I was looking for.

I know there are a lot of PCs who lurk on this list. I hope that some of you moms and dads out there will write and tell how you feel, too. Am I the only one who feels this way? Do the words your PC utters play over and over in your heads after you leave the office, too? Do you find yourselves crying yourself to sleep at night even as you're thanking God for another day? I do.

I know these doctors have to worry about lawsuits and liability, but I don't think we parents are thinking about these things. We want reassurance. We want to know we're doing a good job as parents. We want to know that what we do makes a difference.

I would have given anything for him to say to me, "Anna, I think Alex is doing great! You are obviously doing everything you can to raise Alex as a healthy and happy child. Keep up the good work!" Just some kind of acknowledgment that what I do matters. That's really all I wanted.

I know I can't be the only parent who feels this way. Please write to me and let me know if any of the rest of you feel this way. And if any of you have an appointment with your child's PC sometime soon, please learn from my mistake. Don't ask for your child's prognosis.

Alex's visit really went well. I should be rejoicing. So why am I crying? I guess we just never stop grieving. I feel so fortunate to have all of you on this list to vent to. I know that no one will understand this letter like all of you will. We are so lucky to have each other.

Thanks for listening!

Love,

Anna
mom to Joey and Alex (HLHS)
Baby Hearts Press

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