The Wait and the Wonder

March 9, 2007 @ 8:28 am | Filed under: Special Needs Children

Moreena’s most recent post at The Wait and the Wonder cut me to the heart. After spending the last three months in a suspenseful wait for the phone call that would mean a new liver for her daughter Annika, she just found out that Anni’s transplant team hasn’t yet bumped her to active status on the wait list.

…when we got that letter a few days ago, the one intended to let
us know about the new patient line at UNOS, but shockingly telling us
also, by the way, that a huge part of the way we had viewed
the world for the past 3 months was simply wrong, we were right back to
the feeling we had 5 1/2 years ago. The feeling that we had been
walking through the world upside-down, and no one had bothered to tell
us.

…We knew that Anni’s surgeon still had serious reservations about
transplanting her, given her history. We couldn’t help but wonder if
Annika’s inactive status meant that Chicago had given up on her, and
neglected to mention their decision to us.

In short, we had absolutely no idea what was going on. We didn’t
have a clue about what is easily the most important issue in our lives
together.

"Is it us?" Moreena wonders. "Or does every parent go through these horrible moments, wondering
whether or not anyone even bothers listening to their questions."

Oh, Moreena, it isn’t just you! Your post smacked me right back to Wonderboy’s infancy, when the geneticists were running a bigtime takes-a-month-for-results chromosome study to determine whether there was some genetic syndrome which tied together all his various medical problems. He was three months old, and then he was four months old, and we were waiting, waiting, for that call.

I had, of course, Googled his collection of abnormalities. About ten different websites told me that my son had four of the five primary markers, and several more of the secondary markers, of a pretty scary condition called Beckwith-Wiedemann Syndrome, also known as gigantism. I tried to be patient, giving the doctors time to complete their tests, knowing they would call me as soon as there was a firm diagnosis. I knew, too, that they had no idea I was sitting by the phone chewing my nails off over Beckwith-Wiedemann. They didn’t want to scare me with possibilities that might not even be in the picture, and how were they to know I’d pieced together the clues from their pointed questions and Wonderboy’s symptoms? 

But the days, the weeks, ticked slowly by, and the waiting was agony. The waiting is always agony. I can handle a bad diagnosis better, honestly, than I can handle not knowing. Finally I couldn’t stand it any longer and I called the geneticist. "Are you suspecting Beckwith-Wiedemann?" I blurted. The voice on the other end of the phone stammered in obvious surprise.

"We were," said the doctor, sounding shocked I’d even heard of the syndrome, "but we ruled it out two weeks ago."

Two weeks ago. Two weeks of our lives spent wondering, praying, mentally preparing ourselves, trying to be normal and sunny with our other children but all the time haunted by the back-of-the-mind fears that want to strongarm their way to the front of the mind and dominate everything.

Two weeks, it turned out, during which we need not have worried about that particular spectre, because the doctors had already crossed it off the list.

Months later, I had the honor of being the guest speaker at a large assembly of doctors at that same hospital. It was an incredible experience, and I should maybe write more about it in another post. But one of the best things about it was that it gave me the opportunity to say something I’d wanted to say for years. The world has changed, and doctors are going to have to adjust to a new playing field. They have to know that their patients (or their patients’ parents) are going to go straight to Google when they walk out of the office. We have more access to medical information now, and it’s hard to figure out which sources are reliable and which ones apply to your specific case, and it’s easy to jump to the wrong conclusions or assume a worse diagnosis than is really the case. I’m not saying it’s necessarily a good idea to try to do your own research, but a lot of us are going to do it anyway. How can we not try? Sometimes it’s a parent’s hunch that saves a child’s life. The parent has a lot more invested in "the case" than the doctors do, and the questions consume that parent’s life in a way far more raw and pressing than even the most ardent or compassionate professional curiosity.

In the same way, a parent can’t help but think nonstop about when The Call will come, when there is a life-affecting phone call expected. My two weeks of waiting for the call that might put a name on what was wrong with my son were nothing compared to the three months Moreena has spent waiting for the call that means her little girl gets another shot at survival.

In short, we had absolutely no idea what was going on. We didn’t
have a clue about what is easily the most important issue in our lives
together.

Those are heart-piercing words. I am spitting mad on Moreena’s behalf today; I can’t help it; I resent the notion of a medical team knowing more about a family’s reality than the family itself. The wait is hard enough. At the very least, a mother deserves to know what she is waiting for.


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Comments

5 Responses | | Comments Feed

  1. This is so, so true. My children don’t have any serious medical problems, but the medical world (and everything else) has changed. Doctors roll their eyes – and some get very annoyed – when they hear “I read on the internet”… But parents are very active now, searching for answers and the doctors have to adjust to this. Poor Moreena. We will certainly pray for her family. How sad.

  2. Thank you, Melissa. It helps more than you can know to hear stories of other parents struggling with the not-knowing. The medical world has changed so much from the days when parents were, essentially, locked out of the room when their kids had medical issues. It does take up an unbelievable amount of mental energy, trying to force yourself *not* to call, and *not* to appear the crazy, out-of-control, neurotic parent in the eyes of a medical professional. In most ways, the new assumption that parents will be involved and informed every step of the way has meant great improvements in the care of kids. But it has introduced its own set of very real difficulties, including some pretty incredible miscommunications. Or, as in your situation, not realizing that the parents’ end of the conversation might not *just* be informed by what the child’s doctors have chosen to reveal.

  3. This post went straight to my heart. I remember waiting months for a call that was supposed to be “any day now”, summoning my dd in for major surgery. Trying not to phone for an update. Trying not to cry on the phone when I learned first the surgeon then the booking clerk had gone off on holiday, changing all the schedules. Knowing my dd’s condition was deteriorating but that nothing I said would make them call sooner. Not wanting to be seen as a pushy parent because if they disliked me they might treat my dd poorly. Keeping her practically in isolation so she wouldn’t get sick and have the surgery postponed. Actually getting the call one morning but it was too late, she’d had breakfast …

    And then when the call did finally come, we were at the movies, and when we got home we had to rush straight into hospital. So much for our plans for a gentle transition for dd!

    I appreciate doctors are terribly busy, but I for one would pay extra taxes for the wages for a liaison clerk whose job it was to keep parents in the loop!

    My prayers go out to Moreena and all parents with sick children.

  4. Oh, I feel angry and sad for Moreena, too. I’m so sorry to hear this.

  5. I am greatly disturbed at the delays on placing this young lady onto a Liver Waiting List, equally so the failure to communicate with the family.

    It is a distressing time for the daughter and her family and they should be receiving every support from the Medical personnel and also any support agencies.

    Your emotive story does identify many concerns which do need urgent address.

    Thank you for sharing.

    You have a wonderful blog.