Shame on You

Hello Dr. Castaneda,

Greetings from Germany. I really have to take a moment here and thank you once again for your call. You really have no idea how totally surprised I was (and unprepared). I cannot express my appreciation.

Dr. Castaneda; I am sending you here the translated reports from Marc’s catheterization of 1991 and his checkup from January of this year. Again, this information is limited; however I would like to know your opinion of these findings. I shall phone you next week and perhaps your secretary can tell me a convenient time to reach you.

I hope this fax finds you well, Dr. Castaneda, have a nice day and again

Thank you very much,
Tracie, February 11, 1994

February 14, Dr. Castañeda phoned again. He wanted to see the last catheter film itself.

February 17, I greeted the Federal Express driver delivery person at our front door. I said a silent prayer for its safekeeping as he took the package from my hands. I watched him turn, walk down the steps, climb up into his truck, fumble with something for a moment and then watched him back slowly out of our driveway. He glanced up to see me still staring at him. He waved as he put the van in first gear and drove away.

I called Boston the following day. I found out that the package was delivered on February 18, into the hands of a Mr. T. Smith in receiving at 10:36 that morning who forwarded it to the mailroom whereupon it came into the hands of a Ms. S. Perkins from Dr. Mayer’s office who delivered it to a Ms. K. Milligan, the manager of cardiac surgery who would personally give it to Dr. Castañeda.

Hello Dr. Castañeda,
Attached please find the following reports:
March 1985 – after Marc’s first surgery,
December 1985 – after Marc’s second surgery,
August 1991 – his catheterization and
Jan. 1994 – Marc’s most recent checkup.
Thank you once again for your attention in my son’s case.
Sincerely,
Tracie

April 2, 1994, I received the following fax:

Dear Mrs. Frank-Mayer:
I reviewed the latest cineangiogram and also the cardiac catheterization data and, although your son certainly has a very complex problem, I do think that there is a chance to improve him significantly. At a repeat catheterization here, one should get into the left pulmonary artery or at least obtain bilateral pulmonary venous wedge pressures. From a surgical point of view, one has to first eliminate both left and right Blalock-Taussig shunts, reconstruct the left and right pulmonary arteries, and also communicate the left and right pulmonary arteries centrally, since there is a severe obstruction between these two vessels. Depending on how much time one has to spend doing that, one can either complete the fenestrated Fontan operation or interpose a bidirectional cavopulmonary shunt followed 8 to 10 months later by the fenestrated Fontan operation and then at the second stage complete the fenestrated modification that we developed here for the Fontan operation. I would not be in favor of a repeat palliative shunt operation on the left side; this would just add to the pathophysiology and anatomic complexity.

I hope this information is of value to you.

Best wishes.
Sincerely yours,
Aldo R. Castaneda, M.D.

The following day, Easter Sunday, we three set off in the car headed towards France for a week. This was the first journey, the first time ever in fact, that Helmut and I ever experienced a tentative sense of repose and dared to sit back and embrace a respite away from the edge of the anxious seat. We were reduced to silent smiles as Marc quietly sang in the backseat while outside the countryside rolled by and the sheep grazed and every now and again a village cloistered around its church steeple and the flowers grew wild and everything seemed right. Finally. It was, indeed, the first time in our lives as parents that anyone had ever given us hope for our son.

Ever.

The Monday morning following our Sunday night return, Marc stayed home from school with a fever, vomiting and diarrhea. Helmut went to work. I called Lufthansa Airlines and instructed them to pull our files – if they in fact still existed – and prepare the necessary documentation we would need for our flight to Boston.

Then I called the University Clinic for the first available appointment with the Professor.

“Good afternoon, Children’s Cardiology Department. You’re speaking with Nurse Barbara.”

“Guten Tag Nurse Barbara. Tracie Mayer here. Ich Grüsse Sie.” (“I greet you.”)

“Guten Tag Frau Mayer, I greet you too.”

“Does the Professor have a moment to see me today?”

“Is Marc not well?” she asked me.

“Marc is okay. It’s me. I must see the Professor as soon as possible. It’s urgent.” I told her.

“Let me see...Frau Mayer, can you come by late this afternoon, say between five and six o’clock?”

That would be perfect – by then Helmut would have received the faxed information from the airlines which I could stop by and pick up on my way. If it was the same document as the one before, the Professor would need all of a minute to fill it out and sign it. I remember thinking that he would feel better – not even better – he’d feel great about filling it out this time around and sign it in a jiffy, happy and relieved at our good fortune.

“That’ll be fine!” I said. “I’ll be there,” trailed the receiver as I hung up the phone in a rush.

The fax from the airlines, which indeed turned out to be the same document as the previous one when we flew to America five years before, lay on the seat next to me, inserted in transparent plastic, safe and secure out of the smudge and crumple zone. I was all torn up inside. Mustered up every ounce of courage I had. Prayed for vision. Forced myself to slow down at the yellow lights. Were we doing the right thing? It was five minutes before midnight – what were our options? Couldn’t stay here. Dr. Castañeda was offering us hope and a plan to save Marc. Here, the doctors didn’t know what to do.

You know this is really a no-brainer, I told myself. It’s just that I’m used to the doctors here. “Have you lost your last goddamn mind? Somethin’ beats the hell out of nothin’ all day long. Don’t go stupid on me now. You know your daddy didn’t raise no dummies!” Daddy’s voice rang in my ears. Had to maintain a brave face for Helmut. A big, big chill was swelling around his feet: “What if these Americans don’t really know what they’re doing?” he was starting to wonder too often aloud.

“They know what they’re doing, they know what they’re doing, don’t be afraid, ol’ girl,” I told myself. “After all, the third time’s the charm. Best things come in threes, and if you don’t believe these old wives’ tales then you’d better believe in your family unit which is you and Marc and Helmut, one, two, three and that it’s going to remain that way. Believe it! Have to let Marc’s teacher know...on second thought, maybe not. She’d probably mean well, but I could just see her standing at the head of the classroom, calling her students to attention and then sharing with them the fact that ‘MARC MAYER IS GOING TO AMERICA TO GO TO THE HOSPITAL AND HAVE HEART SURGERY AND MARC WE WILL BE THINKING ABOUT YOU...ARE YOU AFRAID?’

“No, no. I’ve got to downplay this as much as possible. Marc’s got to have a most positive mind-set. There’s something in Proverbs...what is it? Oh, yes. A merry heart is as good as medicine. That’s right, that’s it, I don’t doubt that at all. Take it all one minute at a time and keep your eye on your goal. Can’t allow Marc for one minute to be unduly frightened. Got to go into this thing with the right spirit.

“I know what I’ll do – I’ll tell the school director instead. Yep, that’s what I’ll do and I’ll do it the day before we go. That way, there’s no chance of Marc having to deal with this with his classmates. And I’ll just tell him – what’s the guy’s name? Doesn’t matter, that we would appreciate it greatly if when he shared this information with the teacher that he be kind enough to ask her to keep her mouth shut about it.

“I have to pack. I wonder what the temperature is there now – not that it really matters anyway, but I’ll just ask somebody in Boston the next time I speak to them which will probably be tonight. Man! If everything could be so easy. I’ll call the German Rescue Squad when I – well, maybe I won’t have to call because maybe we won’t even need a doctor to take with us. We ended up not needing one the last time. Yeah, but the last time Marc wasn’t about to face surgery either. Okay, don’t fret, don’t fret. Let’s just wait and see what the Professor thinks is the best thing to do.

“I wonder if Helmut reached Cheryl about the insurance. Hope Marc’s bug is gone before we go...Lord, we are about to make a decision that will affect the rest of our lives. Please help Helmut and me to see clearly through our tension. Help me to bury my anxiety. Reassure me. And please, please for our child’s sake, let us be doing the right thing.”

The gate was up. I drove into the grounds. Like all mothers, I believed God would make everything all right.

In about eight minutes I would be thunderstruck.

“Maybe you didn’t understand me Professor,” I said.

Each of us examined the other as I rose, slowly circled my chair, stationed myself behind it and with outstretched arms leaned onto its top splat. My eyes bored into his.

“So I’m going to repeat myself. Dr. Castañeda, whom you know, is preparing to do surgery on Marc immediately. He has told me personally over the telephone that he and his team have an operation that will significantly – understand me correctly – significantly improve Marc’s health. Helmut and I are, as you and I speak Professor, making arrangements with the hospital, the hotel and the airlines. Now all I need you to do is fill out that paper there for Lufthansa.”

“Frau—”

“What Professor? It’s the same document as the one you filled out the last time we flew to America and I don’t understand why we are even having this conversation. Just please fill it out and sign it!”

“Frau Mayer, I really don’t see this as necessary.”

The knot knotting in my chest was about to asphyxiate me.

“What do you mean you don’t see it as necessary? You know better than anyone else that if Marc needs oxygen during the flight, the airlines have to be notified beforehand! You’re the one who scared the daylights out of me the last time we flew – What did you say? As I recall it was something like, ‘It’s not a good idea – the authorities would have to be informed – IS IT REALLY NECESSARY?’ Well Professor – this is necessary. This trip is really, really necessary. This trip is so necessary I can BARELY SEE STRAIGHT!”

“Frau Mayer,” he said, looking at the document, “I cannot si –”

“Wait a minute! Wait...just...one...minute,” I said slicing my hand through the air the way Uncle Boo always did when he didn’t want to hear anymore. The conversation was beginning to stagger my mind. A shake of my head stressed my disbelief.

“Professor, with all due respect, you still don’t seem to get it. We don’t have time for what you cannot do!” I said walking over to his desk and pointing my finger at the document. “I know I’m repeating myself, but you aren’t giving me any choice. Again, this-is-the-samedocument- you-filled-out-and signed the last time we flew to America! So why won’t you sign this one? Where is the issue here? If it’s a matter of time – and I know it will only take all of three minutes – I am prepared to wait!”

“I don’t see any necessity for him to go to Boston,” he said.

Whoa Nelly.

“You, you what? YOU WHAT? What do you mean you don’t see the necessity of him going to Boston?”

“Frau Mayer,” he said. “If I sign this paper for you to take him to America, it would be like an admission that our surgeons here are not qualified to operate on him and—”

“WELL, THEY’RE NOT!” I backed away from him and began to pace the room, counting out the critical issues on my hand.

“Now – let me get this straight: are you telling me that I had the absolute fortune of making contact with one of the leading heart surgeons in the world who understands the urgency of our situation, who knows what procedure he plans to perform to save my child’s life and is preparing his team and on top of all this – is the only person on this planet to ever have given me and Helmut any hope about Marc’s future and we should not go running to him? Are you serious? I mean, do you really expect me to let you people operate on him and you don’t even know what you intend to do? Is that what you are trying to tell me? Tell me that I’ve got it all wrong, Professor, tell me—”

“Frau Mayer, I must support my surgeons.”

I eased myself once again onto the edge of my chair. Caught my breath. A long measured moment hung in the air before I spoke. Should I come at him from a position of strength? Should I beg? You know, I’ve never really been a damsel in distress type of girl, but at that particular moment, I thought I would succumb. ‘You’ll get more flies with sugar than with shit, sweetheart.’

‘Bullshit Theresa! Don’t tell our child that! You listen to your daddy and stay on his ass, Tracie! You know it ain’t no givin’ up and no givin’ out! Tell that man to sign the goddamn paper or you’ll have pickets in front of the hospital and in front of his house at nine o’clock sharp in the morning!’ I leaned forward, propped my elbows on his desk and rested my chin on the back of my hands. Looked him square in the eye. Considering my predicament, when I first spoke, it seemed as if I’d been dusted with a hypnotic calm.

“What would you...choose for your child, Professor?”

“Frau Mayer—”

“WHAT WOULD YOU CHOOSE FOR YOUR CHILD, PROFESSOR?” I leaped out of my chair knocking it over. “THIS IS MY CHILD’S LIFE WE’RE TALKING ABOUT HERE GODDAMNIT! How dare you be more concerned with what someone will think about what your surgeons are doing than what you can to help me save this child’s life! Forget being a doctor for a minute!” I said with a thwack of my open palm on his desk. “Where is your sense of compassion for Christ’s sake?”

He stared at the document while fiddling selfconsciously with it as if his fingers were stuck not only to its transparent packaging, but to the right and wrong and life and death of the situation. The hovering silence swelled to a crescendo, then burst like a bomb all around me. My flare-up had made no impact. Apparently that gray matter of his brain controlling his comprehension as well as the factor affecting his emotion had shut down.

“I can’t sign it,” he said.

He wouldn’t look at me. I walked over and snatched the cellophane out of his hand and rested my knuckles on his desk. I stood there, looming over him, inches away from his face, blinded by fury and probably frothing at the mouth but I refused to let the tears fall.

“Let me tell you something,” I said. “I’ve been going through hell for nine years – NINE YEARS! And you know what they say? They say that if you’re going through hell just keep on going through it because you will eventually come out on the other side and THAT is JUST what I intend do with or without your help.

“And-believe-you-me one more thing: not you, not your surgeons, not NOBODY – NOT NO GODDAMN BODY IS GOING TO GET IN THE WAY OF ME SAVING MY CHILD’S LIFE! YOU GOT THAT? NOBODY! And you must be insane if you think otherwise.” I walked to the door, and yanked it open.

“Shame on you,” I said.

Later that evening Helmut called him at home. He needn’t have bothered.

The following week went by in a flurry. Everything came to a head on April 19th. That morning, I called Dr. Tinschmann. He told me that he would fill out the documents for me. I needed to stop by his office anyway so he could listen to Marc’s lungs and see how he was faring. And true to his word, he filled out the document. It read in part:

EDA 04: Prognosis for the trip? No problem expected, (the child) has flown several times.

EDA 09: Shall passenger be escorted: For any cardiac incidents, a doctor to escort the child would be recommended.

I faxed the paper back to Lufthansa at noon. By five thirty that early evening I would have eaten shit with the buzzards for just a scintilla of serenity. By eight thirty that night, I was ready to blow my brains out.

Upon receiving the fax, Lufthansa once again rejected our request because the document again was not signed by the Professor and before the German Rescue Squad could decide who and under what conditions someone would accompany us to Boston, they would need that information from Lufthansa which Lufthansa of course could not give them, and since that was the case, the Rescue Squad would need to talk to the cardiologist, so of course to cut to the quick of the matter, I called Dr. Castañeda who was in surgery, but thankfully Dr. Freed, his cardiologist colleague was available and he told me that he didn’t believe Marc needed any assistance, and that even if he did, it would only likely be minimal and if that were to happen, the airlines have emergency oxygen on board.

He was sure Marc could make it, but he would definitely speak with the German Rescue Squad if that would give me peace of mind.

So in between trying to beat the clock with the sixhour time difference and busy signals in order to hook up this one to speak with that one and getting the final cost breakdown from Miss Coulomb in Boston on the hospital expense for Herr Götzle representing the insurance company in Germany, which for the past couple days had been trying to understand why the operation had to be carried out in America anyway, and making room reservations for Soon, Real Soon, This Month 1994, and worrying about who was going to take care of our dog, and swallowing my heart back down to where it belonged yet continuing to smile while observing Marc sit on the floor and tap the ping-pong ball against the paddle three times before tiring and me saying, “It’s okay, little man, we’re getting ready to go see Dr. Castañeda and he’s going to make you feel so much better and you’re not going to be out of breath anymore,” and in the next moment sounding completely addle-headed speaking on the phone with our internist (who was now returning my call at the end of his busy day) as I tried to remember just why I had placed a call to him earlier (which was to find out Helmut’s and my blood groups), I pleaded our case again that evening with Lufthansa whose Frau Sommer informed me that now under no uncertain terms could we fly with them.

Someone from the Professor’s office had warned them about Marc’s condition and they were not willing to take the chance and let us fly with them.

“I’m sorry,” she said.