Scrambled Heart, Part 1

I have spent countless days in hospitals: Someone checks you in, you fill out papers, they take copies, you wait. Someone else rolls your son in a wheelchair down the wide corridor, past the grand piano where elderly volunteers play “Let Me Call You Sweetheart” or “Five Foot Two” or “Amazing Grace,” up the elevator to a private room on the sixth floor where you’ve been before. You follow behind, making small talk and smiling, packing the necessary equipment – cell phone, laptop and an unread book – you will need to stay occupied while you wait. And wait. You wait for blood tests and x-rays and doctor visits while you play with your cell phone downloading worthless ring tones and pictures of purple mountains you will never look at again. You watch the black shadows move down the concrete walls on the buildings outside the window. You rub your son’s palm with your index finger, the way you did when he was a baby. You try to read, but your eyes blur. You fill up the room with balloons from the gift shop, because no one even knows that your son is in the hospital, again, and no one sends balloons or stops by or calls. So you fill in the space.

It’s May, 2004. My son, Zeke, is in the hospital this time for a heart transplant evaluation. I try to act confident and cheerful and ask appropriate, intelligent questions of the doctors and social workers from the transplant team or the nurses who visit Zeke’s room unannounced, twenty-four hours a day. When a doctor says he will be in to see you in the morning, it may be noon, or it may be evening, or it may be tomorrow morning, or he may have come while you stepped out for ten minutes to bring up a tray of tomato soup and iceberg lettuce from the basement cafeteria and you missed him but no matter because he will be back tomorrow, or maybe not, and the nurse will contact him, or maybe not. And then, after two heart catheterizations because one is not good enough, they finally have some results to share and a treatment plan and the results are all bad and they have no plan because there are no real options and they tell you your son has “a year-and-a-half to two years to live” unless he has a heart transplant.

Blood work reveals he has Hepatitis C (this is a new thing!) no doubt from past blood transfusions, probably cirrhosis of the liver from the Hepatitis, and his lung functions are extremely poor (you knew that) and consequently he may not be a candidate for a transplant and the transplant team quits visiting; they will change his medications and send you home – and discuss him in conference next week and let you know. And they tell you that he has “reached the normal life span of a child with a heart condition like this” and they tell you again that there are really no good options and his pacemaker is not working right and his mitral valve is leaking but they are not certain it would be worth the risk to open his chest again to fix those minor problems.

I sit and smile at the doctors with my lips closed and I purse my lips wisely and nod my head and laugh a lot and I try to find something to be hopeful for because Zeke is sitting in the room with me and I need to always act brave and optimistic for him because I am still the mother and he still leans on me, a lot. I squeeze my eyes and don’t let one little teeny drip escape because I know there are gallons more where those come from and I have learned after countless hours curled up on bathroom floors sobbing: There is no such thing as a good cry.

I was twenty-four when Zeke was born. Young and naïve about everything, but who knew about birth defects? When people asked if I was hoping for a boy or a girl I replied, “Oh, it doesn’t matter, as long as it’s healthy.” That was in 1978, prior to testing to determine the sex or complications before a baby was born. Zeke had his first heart surgery at three days old.

He was a “blue baby,” doctors said, born with a missing ventricle: a three-chambered, scrambled heart. Tricuspid Atresia, the official diagnosis, means the tricuspid valve never opened and consequently the lower right chamber never formed. Mike and I stared at the cardiologist who gave us the diagnosis. “So this is serious?” I asked wide-eyed. “Very serious,” he said.

A five-pound, ten-ounce infant. The surgeon operated on Zeke under a microscope. They didn’t have a corrective procedure for Zeke’s defect so the team of surgeons created a shunt; they re-routed the main artery to the right arm into the lungs to provide more oxygen to the blood. The cardiologist came out mid-procedure and told Mike and me they didn’t expect Zeke to survive. I folded my arms across my chest and looked at the floor. The vessel they were trying to sew into was “like wet tissue paper” as the doctor described it, and would collapse if they attempted to suture it. “We’re standing around meditating,” he said.

I locked myself into the waiting room bathroom and did my own meditating – forehead flattened into the mirror, my hands stripping milk from my swollen breasts into the porcelain sink, the antiseptic soap smell making me nauseous. My legs buckled and I slumped to the linoleum floor, head held on my knees, sobbing in silent gasps, praying – no, demanding – that my baby survive. “I want this baby,” I told God. “Please, please, please, please, please,” like a child begging for candy at the grocery store.

Eight hours later a nurse ushered Mike and me into the neo-natal intensive care unit. “Scrub your hands to your elbows for a minute,” she told us softly, then led us to a tiny, naked infant, arms and legs outstretched and strapped to a table, warming lights blaring over his head. The baby was crying but not making a sound – a breathing tube was stuffed down his throat. “My God,” I thought at first glance, “that’s somebody’s baby.”

We ate and slept at the hospital. At night we spread out a thin piece of foam on the waiting room floor and buried ourselves in the white cotton blanket the nurses provided. In the morning we rolled up our meager bedding and wadded it into a closet.

Four weeks later we walked out the hospital door, Zeke cradled in my arms. We took the first picture of his sleeping face swaddled in a blue flannel blanket. If Zeke was a cat, he had lost his first life. The morning we finally emerged from the hospital, fall met us at the door. The air was blue and crisp, the sumac brilliant orange and yellow, red maples glowed gold in the sun; what a welcome to the land of the living. I took off my shoes and let the dew-covered grass cushion my feet. I have rarely felt more alive.


5 responses to “Scrambled Heart, Part 1

  1. Love you mom

  2. I love you too, Sue, as I know many people do!
    I think of you and your family often – Zeke has forever made an impact on my life, as an example that anyone – and I mean anyone – given the chance can succeed! Give Zeke my love, too! I still listen to Gabe’s CD :)

  3. Hey Sheila!
    Great to hear from you! Big hugs!

  4. wow, I am eager to read more. thank you for writing/ sharing this.

  5. Thank you for writing it is greatly appreciated.

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