An Anniversary Book Excerpt
I may have mentioned that I got the rights back to my book, Heart Warriors, A Family Faces Congenital Heart Disease. I am almost done with rewriting it to include my journey with post traumatic stress disorder, but that journey is still unfolding. Tonight is an anniversary – the anniversary of my child’s first surgical scar. It’s on his wrist. It’s still there. I sometimes see it at the dinner table. Unlike the scars on his chest or groin, which I never see anymore now that he’s seventeen, the ones on his neck, wrist, and crook of his elbow are more subtle to most people, and more obvious to me.
I’m sharing an excerpt from my book tonight that begins a little before May 4, 2003 and ends with the day of Liam’s first open heart surgery on May 12, 2003. If enough people read it, I may post more chapters from the book while I’m finishing the new material. So, if you like it and want more free book, please share. I’m not on most social media anymore as part of my PTSD recovery.
With this distance, I can feel so much more compassion and love for that young couple who had to fly a thousand miles for a chance to save their son. It seems like someone else’s story, even though I lived it, but this is not the dissociation I felt at the time of the trauma. Rather, this is how far I’ve come. I can now cry for the sheer enormity of what Amanda circa 2003 faced, now because that version of me had to take each minute as it came and give everything she had to save her son. She was a pretty bad ass 29 year old, and I’m proud of us.
In the days leading to transport, we had Liam baptized by one of the hospital chaplains. The hospital broke their own rules and allowed a large crowd of our relatives, including Mandi, who’d spent so much time in this place before, into the NICU to witness the event in person. I don’t think there was a doctor or nurse in the PSL NICU who thought Liam had a snowball’s chance. When Jim told Dr. Smooth we were going with transplant, he said flatly, “Well, good luck with that,” as if we told him we were trying out for an Olympic gymnastics team in our present condition. It wasn’t encouraging.
Fianally, the chaplain baptizing Liam said, “We all need to be here for Jim and Amanda in their time of loss.”
She said “loss,” not need, and that set the tone for our last few days there and fired my desire to escape with both Liam and my scraps of hope to Los Angeles.
I was supposed to be discharged the Friday after Liam was born, but that day I felt an intense pain in my right side. The attending doctor ordered an ultrasound of my liver and took blood gases, but it was all normal. The attending OB/GYN kept me an extra day to be safe. I learned a few years later exactly what that pain was when it led to an ambulance ride and the removal of my gall bladder. But at the time there were greater worries than my mysterious pain, which did pass. I was discharged on Saturday night, very late on Saturday night.
We held Liam and kissed him goodnight. Back in the familiar parking garage, where our new car sat for a week, I reached down to fasten my seat belt and my eyes locked on Liam’s baby carrier in the back seat. I stared blankly and remembered the little green snap-front “going home from the hospital” outfit with a tiny lion on it that I’d bought in April. I sighed, pulled off my glasses, and mopped up a few more futile tears.
The outfit and the baby carrier were coming home with me, but Liam was not. I was tired of crying. I was annoyed with myself and my weakness. What was this but one more small theft committed by Fate? As long as she hadn’t taken Liam, I had no right to lament going-home clothes or the hospital standard-issue baby pictures no one ever takes in the NICU.
We would send no formal birth announcements for William James Adams, born April 28, 2003, at 7:05 P.M., weighing seven pounds seven ounces, and twenty inches long to family and friends. We would be lucky if we made it through the coming days and weeks without funeral bulletins.
Rather than worry about what he would wear home from the hospital, I worried if he would ever leave it alive. As we backed out of the parking space, leaving Liam for the first time in his five days of life, I stubbed out the last cinders of my expectations and felt a cold building from inside my bones.
We slept in our own bed for the first night in a week, and we were on the road by 6:30 A.M. Sunday and at Liam’s side until midnight.
Ironically, the Ronald McDonald House called and said we finally had a room. We were shipping out the following day, so we told the clerk to give the room to someone who needed it more.
As we left Liam for the second and final time, the attending physician in the NICU came to get our child and our consent. She needed to do a “cut down” to place a central line from his arm to his heart for Liam’s life flight the next morning. I made a comment about how I wouldn’t want to see that, and she said she wouldn’t let me see it even if I wanted to.
The last time I saw Liam that night a lone doctor was strapping my baby in yellow restraints to board on the other side of a window to place a scar into the sweet softness of his left wrist that I can see with my eyes closed. That was Liam’s first scar, and my first surrender to informed consent.
The Monday morning Liam was airlifted from Denver to LA, we were back at the hospital before 7:00 A.M. They didn’t even kick us out for shift change. We held Liam until the flight crew showed up. I didn’t care what the nurses might say since we would cease to be their problem soon, but they didn’t challenge us. To us it was a beginning, to them it seemed like an ending.
The Children’s Los Angeles (CHLA) flight crew came with EMTs in an ambulance from the airfield. They offered either Jim or me the jump seat in the plane, but I couldn’t possibly handle it since I was still in a lot of pain from the C-section. Jim could have gone, but he didn’t have any extra clothes.
Then there was the problem of how I would even get home from the airport if Jim went on the jump seat. I was on restricted activity, heavy pain meds, and I couldn’t drive yet. I wasn’t even allowed to carry anything heavier than my purse. So, we walked Liam to the elevator in his fancy flight for life incubator. The flight crew told us we could go down to the parking lot all the way to the ambulance doors with them, but I couldn’t. We couldn’t. There was so much we could not do.
Liam was leaving us. We had to say goodbye and we had to do it here. He took his first elevator ride, first car ride (in an ambulance), and first flight, all without us. If I took one more step toward that inevitable separation, my heart would break completely in two.
I trembled seeing Liam in that plastic box that looked too much like a Wonder Woman’s invisible coffin. But I didn’t allow myself to cry until that elevator door closed. I did not dare show those angels who brought us hope how much they tore the very heart out of me when they took my baby away. There were no choices, there should be no resentments. They were heroes and due no guilt.
I pumped one last time to relieve myself. We stopped by the Labor & Delivery area to see if the on-call doctor would give me a new Percocet prescription. She hadn’t been on call the week before. She didn’t know me or Liam. She glanced at my chart then looked down her nose at me and said, “It’s been seven days since your C-section. You should be feeling better by now and not really needing the Percocet anymore.”
It was clear she didn’t want to give it to me, like I was a junkie that came in off the street. I told her I didn’t think I would need very much, but I had no time to rest. She hesitated.
Jim gave her a hard look and said, “Our baby was just airlifted for a heart transplant, and my wife has to walk through the airport in the morning and get on a plane to Los Angeles.” I can always count on Jim when my own words fail me.
The doctor relented and scribbled off a surprisingly generous prescription. Then we got the hell out of PSL. We should not be there without Liam. He was the whole reason we were ever at PSL. My baby was no longer at the end of Dr. Smooth’s promised hallway. All those promises floated off in a misty jet stream over the Rocky Mountains.
On the way home, I went to a specialty store to buy nursing bras. When we went in for the fitting, the clerk asked me why I didn’t bring my baby. I didn’t cry when I told her. It was what it was, and I went on with buying my new bras. I was doing OK, until I got on my phone.
Back in the car, I called the insurance company on my cell phone to find a doctor for my follow-up care in LA. The agent gave me three names. I called the first and the line was out of service. I called the second and the woman who answered asked if I was an existing patient. I told her, “No, I lived in Colorado and was coming to California.” She was beyond rude and told me the doctor would not see me. I tried to explain my situation. I had a C-section a week ago, my child was in the air on his way to wait for a heart transplant, and I needed to be seen by a doctor. But she was immovable.
She was cruel.
Her doctor would not see me. I felt like the Balrog when Gandalf put down his sword and staff and said, “You Shall Not Pass!” She was so definite, and I was so desperate.
I hung up and cried. Jim wanted to pull over and call her back, but I told him to let it go. I didn’t try the last number. I didn’t have the energy to tell my story again that day. I would go to Los Angeles and figure it out.
We had no food at home, so we ate at a Wendy’s on I25, and it hit me so hard that Liam was gone. I can’t drive past that Wendy’s, even now, without remembering May 5, 2003 – Cinco de Mayo. That moment of looking out the window, staring at the blue sky over the Rocky Mountains and missing my son on his way to the coast is seared in my memory like a brand. That brief separation and the longing for my child defined me in a way that would impact all of my choices.
Later that day our families came over to help us pack for a long stay in California. At home, I sat on the floor of Liam’s nursery sorting through his many things, picking through hope in the form of tiny onesies and wee little socks.
I was right next to his crib, but I couldn’t stand to look in it. I asked Karen to put his baby carrier in it. It became a collective, like nesting dolls of empty places where my baby should be. I could have popped my stitches and pulled out my empty womb and thrown it in the seat and then shoved my heart inside of that, but my heart was already in California, and my womb was busy weeping. I didn’t have the physical strength to pull myself off the floor without assistance, much less do anything more dramatic than whimper. Even that I would not do with a crowd in my house. I sucked it up.
We had every reason to believe that we would be in LA for a year or longer. The doctors expected it would take eight months before an O+ heart might even be found for Liam, if at all. Recovery and close supervision would follow. We believed we’d return to home and work eventually, like the family I’d watched on the Discovery Channel. My manager said I could work from LA, but for now I was on maternity leave, so I left work behind. We were steeling ourselves for every possibility.
That night, after our family left, I wept my soul raw in Liam’s nursery until I left everything I had in his lonely room. Jim helped me get off the floor. As we turned to our own bedroom for our last night at home, we closed Liam’s door. Silently, I prayed that the next time it opened we’d have our baby. I truly didn’t know if I could bear to ever open it again without him.
Tuesday morning, my mom dropped us off at the Frontier counter at the airport. I didn’t bring a baby carrier because I didn’t know if, when, or how I would be getting home, or if Liam would ever come home alive. I didn’t need extra baggage.
On the plane one of the flight attendants was moved by our journey and made us a flower out of a cocktail napkin. I kept it for a long time. I kept every angel pin, note, card, dried flower, every little scrap of hope that came our way on our journey. Like rungs in a ladder, I might need them again to break my fall.
When we deplaned, Jim’s second-cousin Gary was waiting for us at the baggage claim. Gary drove all the way from Bakersfield to meet us at LAX. At the time, I had no idea how far he’d come or what traffic he’d battled to meet us there in time for our arrival. We got in his minivan and headed for Sunset Boulevard. It took forever.
Anyone familiar with Southern California isn’t surprised by the time it takes to get fifteen miles, but I hadn’t pumped for close to six hours, and I was on a three-hour schedule. At this point Liam was eight days old and my milk was well established. I was in even more pain by the time we finally found the CHLA parking garage.
We went down a loooong hallway to the front desk, and they sent for a volunteer to take us upstairs to see Liam in the Cardiothoracic Intensive Care Unit (CTICU). Seeing that I was barely making it, the volunteer got me a wheelchair, where we rode up the elevator to the second floor.
They waived the two-person rule for Gary, and we finally saw our baby again. Though it was only a thirty hour separation, it seemed like we missed everything. We missed him so much. Liam was our Odysseus in this journey, and we were lost without him.
The CTICU was so incredibly different from the NICU in Denver. The NICU was dark and silent and the beds were so tiny. Even though the babies in the CTICU weren’t much older than the preemies in the NICU, the beds were huge, the lights were bright, and the noises never stopped. It was a constant hum of ventilators and beeps, beeps, beeps, short ones, long ones, alarms over every bed. Within days I would recognize every conceivable beep in this place and learn to tune out the ones that didn’t belong to Liam. I knew which ones mattered because they always brought a nurse the few paces back to our bedside. In the years that followed I would dream about this symphony of high-pitched alarms, but this first day in LA left me shell-shocked by the cold florescent light and the constant noise.
By the time we saw Liam, I was way beyond needing to pump; I was leaking and damp. The desk attendant couldn’t find a key for the pump room. Then Dr. Badran came to Liam’s bedside and started to explain things. The key was still missing, but when Dr. Badran realized I was going on eight hours of milk accumulation, she fondly recalled when her daughters were babies, and offered her office if they couldn’t get me in the pump room.
The attendant found me a parent sleep room across the hall where I could use my own pump, and Dr. Badran patiently waited for me to go relieve my maternal urges. After I returned, Dr. Badran explained that the cardiologists were shocked by how good Liam looked when he arrived, considering the complexity of his condition. They expected him to be on a ventilator or at least on oxygen, but Liam was breathing the same air we were.
She went on to say that transplant wasn’t a good option for Liam. Given the severity of his defects, he was unlikely to survive to eight weeks of age, much less the eight months we would need to get a new heart. Dr. Badran said that her colleague, Dr. Starnes, would evaluate Liam on Monday and would likely perform a surgery called the DKS – Damus Kaye Stansel or “modified Norwood.” We’d never gotten that much detail from Dr. Doom, and Dr. Badran wasn’t even done yet. She started to draw pictures.
At one point she said, “I don’t understand why you are even here considering they recently hired a surgeon in Denver who could do this with his eyes closed.” Thus, began my secondary education in medical politics and insurance nightmares.
Dr. Badran explained and re-explained Liam’s condition and the surgery to Jim and me, but I was distracted and exhausted, and she could tell. At one point she said, “It’s really important that you understand this.”
Honestly, at that point I understood nothing any longer. I was trapped in someone else’s dream and had no tactile hold on reality. The social worker came and went. She was trying to get us into the Ronald McDonald House behind the parking garage.
We learned things, we held Liam, we melted into puddles in our hard office chairs. The social worker reappeared to tell us we got a room, but we needed to arrive by 3:30 to check in. Gary was still with us and drove us to the Ronald McDonald House (RMH).
I collapsed in our room while the nice man who greeted us took Jim and Gary on a tour of the place so we could find our way around. I’d run myself ragged for more than twelve hours after doing hard labor on the edge of a C-section only eight days earlier, and I’d barely claimed four hours of sleep each night since. It was too much for my body and my mind. I needed to stop.
I first sat in a pale blue chair upholstered in a pattern of Sleepy, the Travel Lodge bear and put up my feet on the matching ottoman. When I caught sight of the two full beds covered in the same bear print, the gravitational force pulled on me like Jupiter as I gingerly climbed onto the nearest one.
I laid on my right side and stared out the window at the spring sky. It was May 6th and warm in Southern California. I lied still and listened to the children playing down below on the RMH playground, the drone of Sunset Boulevard’s heavy traffic, and the occasional car on Fountain. At least twice I heard helicopters, and I faded but never slept. As exhausted as I was, I was like an electronic device that hums when plugged in even if it’s not turned on, always ready to run. I would spend at least a decade in a state of hyper-vigilance so intense that I had no memory of what it felt like to be still on the inside.
Eventually, Jim came back after convincing Gary to head home before the traffic got “bad.” It got worse?
We unpacked a little and then made it downstairs to have community dinner. One of many wonderful things about Ronald McDonald House is the people who volunteer to bring full meals in for the families. That night they served burgers and hot dogs, and the best chocolate cake I’ve ever had. Until that day, I’d never eaten cake at sea level, and while I can tell you many wonderful things about Colorado, our dry mile high cake doesn’t make the list. This cake was soft and moist and chocolaty with a creamy fudgy frosting. It was comfort on a fork, and I had two pieces.
As we sat at a table for four, I looked around the dining room and noticed how many families knew each other. We knew no one. A woman was walking around with her plate ready but nowhere to sit. She looked lost, exhausted, and so painfully sad that it hurt me to see her adrift, so I waved her over to our table.
Jane was at CHLA and the Ronald McDonald House for a month, maybe longer. Her son, Jamal, was born very premature, so his home was an incubator in the NICU, a ventilator. More than anything, Jane longed to hear his voice, to hear him cry just once.
She gave us the inside scoop about locking up our food and taking the shuttle van that loaded at the back door and dropped at the door of CHLA—especially at night. Some RMH guests were mugged in the Von’s grocery store parking lot that filled short distance between Fountain and Sunset across the street from CHLA.
I told Jim I wanted to take the shuttle van back to see Liam after dinner because I didn’t want to walk that far tonight. Once back at the hospital we stayed until after 11:00 P.M. It had been a long, exhausting day as we made our way back to the RMH. We never once called it “home.”
We came to Los Angeles expecting a transplant, and we already knew a transplant was simply exchanging one lifeline for another. We’d still be hanging over a cliff waiting out Liam’s life because a donor heart wouldn’t last forever. The surgical option bought us more time for modern medicine to blaze new trails, but it also rescued us from the torment of waiting for a donor heart.
Before Dr. Badran held out surgery as a viable and preferable option to transplant, the only way Liam was going to live was if another child died. In our helplessness waiting for another baby to die so Liam could have a new heart, I had to spin reality, or else feel cruel for wanting my own child to live.
Most likely, if Liam did receive a donor heart, it would have come from an abused baby whose brain was damaged but whose heart kept beating, despite the absence of love. Maybe a child would be killed in a car crash. Either way, the tragedy of others on which we gambled to maintain our hope was almost too much to bear.
Then there was the issue of supply and demand. Crib death babies aren’t usually found quickly, so they’ve been dead too long to donate their hearts. There are few other ways for a baby small enough or healthy enough to die in order to save Liam, since most newborns who die are killed by their heart defects or heart surgeries. The odds were against Liam ever receiving a match. All I could do was hope that if, by some horrible chance, an angry man did shake the life from his own child, that the non-complicit mother would be big enough to give away the unbroken parts of her shattered life. That was my best-case scenario.
To cope, I pretended I was waiting for grace, not tragedy. The sad fact is that the two are traveling companions. Either way we looked at it a baby was going to die, either a stranger’s or ours. Maybe both.
When Dr. Badran first told us that the hospital didn’t want to list Liam for transplant because his long-term odds of survival were better with surgery, we were genuinely relieved. Even as we waited, we talked about how if Liam didn’t make it and if his other organs were good enough, we would donate them, without question. Even if it was only his eyes. It was such an ugly space to fill, the limbo of waiting for one death to save the life of my only child. The Norwood/DKS surgery was a welcome escape from a no-win situation.
Yet it would be a week between Liam’s arrival and Dr. Starnes’ return. That week was less depressing because we had the hope of surgery, but it was excruciating because there was the matter of whether Dr. Starnes would actually agree to do the surgery. The cardiac and CTICU attending doctors and nurses acted like surgery was imminent, but they also offered frequent disclaimers that Dr. Starnes was the final decision maker. They saw no reason why Dr. Starnes wouldn’t do Liam’s surgery, but until he committed, all bets were off. We were in a different limbo.
It was gut-wrenching, and we tried to get them to commit and save us from our anxiety. The nurses would say things like, “Well, if I had to, I’d say I’m ninety percent certain he will want to do it, but again, there are no guarantees.”
I learned over the ensuing years that babies like mine are considered career makers or career breakers if you don’t have the skill or the nerve to handle them. And it’s not only the surgeon’s career, it’s the hospital and anyone affiliated with the cardio thoracic surgical program.
There were, and still are, plenty of surgeons and hospitals that wouldn’t touch neonate Liam with a ten-foot pole, much less a scalpel, because he was such a hard case. So hard a case, that even though Dr. Starnes did plenty of cases equally as difficult, no one would put his name on the line without his consent. I get that now, and I feel beyond blessed that we were in a place that would even consider taking the risk on the only thing that mattered to us.
Other than the “Will he/won’t he?” aspect of our wait, the week leading up to Liam’s surgery was long and repetitive. It was a lather-rinse-repeat week. We knew we couldn’t be in the CTICU from 7:30-8:00 morning or night because of shift changes and privacy laws, so we always shot for getting there right at 8:00 A.M.
We would ride the shuttle to the hospital, eat instant oatmeal at the RMH or breakfast in the cafeteria, then go upstairs and sit with Liam, get updates, and hold him until shift change, when we would either eat at the cafeteria or go back to the RHM to see if there were community leftovers from the sponsored dinners. Then we would go back and stay until 11:00 P.M. or slightly later. During our entire time in the CICU before Liam’s surgery, all of televisions in the unit were constantly running. The TV filled the space where none of us parents had words to offer. We couldn’t talk about where we were, and we couldn’t name our fears, lest they find us.
When we would finally relent and go back to the Ronald McDonald House, Jim stood sentry at the parking garage entrance for the shuttle van while I rested on a bench in the long hallway between the lobby and garage.
While waiting, I looked at the looming wall in front of me filled with photographs of patients and practitioners. Liam’s nurse, Mark, was on that wall. Next to the hospital caregiver photos was a collage of financial supporter plaques. I stared at those plaques night after night, making a game of “find the celebrity.” We were in LA, right on Sunset Boulevard. The only supporters I remember were Danny DeVito and Rhea Perlman. It was an Easter Egg hunt of finding the famous amongst the merely rich. Eventually, the shuttle would pull up to the parking garage exit, and I’d stagger out to get in the van for the three-minute drive back to the Ronald McDonald House.
Back in our room, I pumped breast milk before I slept, took it downstairs to the kitchen to put in our freezer pod, sterilized my breast pump parts with boiling water, packed it all back up to take to our room, then I set the alarm for three hours later, woke up, pumped, and repeated. I went back to bed, and then pumped again when I woke up three hours later. I got less than five hours of sleep each night, but not because my newborn was waking me up. He was so far away across a parking garage and a universe I could not bridge.
One night after sterilizing the hoses to my breast pump and reattaching them, I looked up in the mirror and thought very guiltily and quite sincerely, I was only there for sixteen hours today. I felt like I literally abandoned my son to produce milk to feed him and sleep a few short hours. I believed I was such a bad mommy.
When I finally made it to bed, where Jim was already sleeping, I would lay on my left side, facing the wall and hear my heart pounding in my ear like a drum pulsating and mocking me. Boom, boom, boom – you will not sleep. Boom – boom – boom – your baby doesn’t have your heart. Boom – boom- boom – you can’t give it to him. Boom – boom – boom you cannot win. My own heart mocked me with its healthy rhythm and cruel beat.
The only thing that would make my heart stop in my chest and silence its taunting in my ears was the sound of helicopters landing on top of CHLA or Kaiser across Sunset or City of Angels Hospital down Fountain. The rescue choppers were so close, and each time I heard one I thought, That helicopter carries crisis. A family’s life together is coming undone to the beat of those helicopter blades, and I would say a prayer for the new neighbors while the well of misery deepened in this strange vortex of hospitals in the shadow of the Hollywood sign.
More often than not, I lied awake until there were only forty minutes left before the alarm clock went off. Then I gave up, got up, pumped, and reset the alarm. I felt guilty being anywhere but the hospital, and I never once relaxed in laid-back California.
The day before Dr. Starnes’ return and Liam’s first open heart surgery was also my first Mother’s Day. Jim, sweet as ever, got me a card, but there were no flowers and hardly any mention of it at the Ronald McDonald House or in the CTICU. We were all mothers, but this Hallmark holiday was incidental, like Christmas in a foxhole.
No one could easily call us in the CTICU, and though I probably had messages at the RMH, I don’t remember anyone acknowledging the day. I was painfully aware of it. The irony would have hurt if I weren’t already so raw from the savage screams of my baby who was always so docile and sweet.
Liam was literally starving before our eyes. The doctors switched Liam from bottle-fed breast milk, to breast milk through a nasal gastric tube, to no breast milk at all. Instead, he received IV lipids and fluids to keep him alive. By his sixth day at CHLA Liam was getting daily kidney, liver, and heart ultrasounds. My baby was on the precipice of multiple organ failures, and his body thought it was starving to death.
To conserve energy and keep the blood going to his vitals instead of expending it on digestion, the doctors and nurses would not feed my baby, or let me do it. Even though I would guiltily sneak away to pump, the sound of his primal screams filled my breast with more milk and my heart with more pain. It all made perfect sense to my logical brain, but my nerves were shot.
That last day, we took a photo of Liam’s bare, unmarked chest. We held him as he screamed and screamed, and my chest ached inside and out. The pacifier was an insult. The only way I could effectively comfort him would hasten his death. By midnight it was a moot point. Liam went on NPO (an acronym of the Latin nil per os or nothing by mouth) for the morning’s surgery.
We finally put him down tightly swaddled, and his nurse Judi put a vibrating device beneath him to calm him. Maybe it worked, or maybe he was numb and exhausted, but we left Liam sleeping. That was my first Mother’s Day gift.
We got the last shuttle back to the RMH that night, and neither of us slept more than two hours. We were back at 5:30 A.M. We didn’t bother with the shuttle. Jim flew several paces ahead of me, I was only two weeks postpartum and my C-section incisions were still healing. I staggered up the hill behind Jim to the parking garage entrance, and we went to Liam. I held him, and held him, and held him. Then we met Dr. Bushman.
Dr. Bushman is a pediatric cardiac anesthesiologist and a highly specialized human being. He kindly explained what they would do to Liam during the surgery, and he was patient with us. While I held my baby tight, he was still talking to us at the foot of Liam’s crib when Dr. Starnes quietly pulled up a chair and politely waited to be introduced.
To hear his staff talk about him, I had visions of a god. But here was just a quiet man with a clipboard. He brought paperwork for us to sign. I asked about future surgeries, and his reply was gentle, “Let’s just get through this one, OK?” That scared us more than we’d been since the morning we declined hospice care.
At one point, lost in the details, Jim and I both heard him say there was a twenty percent chance Liam wouldn’t make it through the surgery. Jim choked and spat back, “Twenty percent! No one has told us that before now.”
Dr. Starnes told us very slowly and clearly, “There is a twenty percent chance your son won’t pull through the surgery today, but if we don’t do the surgery THIS morning, there is a one hundred percent chance Liam won’t be alive this weekend.”
Decision made. That was informed consent. We were not so much scared as numb. As we existed in slow motion, nurses and respiratory people, and all manner of pre-op activities fluttered around us. We held Liam until we couldn’t hold him anymore. I handed him over to Jim about fifteen minutes before they came to take him away. I didn’t know I wouldn’t get Liam back before his surgery, that I wouldn’t hold him again that day or for several days. I didn’t know at that moment, that I would soon leave this room and not know if I would ever hold my living child again at all. Had I known how close we were to handing him over, I might have never let him go.
A transport bed appeared like an unwelcome guest, and Jim reluctantly handed Liam to our nurse, Mark, who placed our baby in the bed. It was like Abraham placing Isaac on the altar, but we did not wield the knife, and this altar was acrylic and stainless steel on wheels. All that was left was prayer.
We walked out to the hallway with Liam and kissed him over and over, rubbed his tiny head, and wept goodbye as Dr. Bushman and the nurses rolled Liam to the left. We waited until he went through the OR doors. Then we turned right into the bleak waiting room to begin our time in purgatory. Either we would get a heavenly miracle or begin our descent into the hell of mourning our only child.
The surgery was surprisingly fast. The Damus Kaye Stansel (or modified Norwood operation) is one of the most complicated surgical procedures known to mankind. Imagine a walnut or a strawberry in the palm of your hand with coarse hairs coming off of it. Now imagine trying to cut into that strawberry without destroying it so it can be put back together again. Imagine trying to split those hairs and re-combine them to make new hair. Liam’s heart was no bigger than his fist, and he was less than seven pounds after his “diet.”
The surgery must be fast because the baby’s entire body is put into a hypothermal state, meaning that his tiny infant head packed in ice and his blood removed and rerouted through a machine so his heart can be stopped. Liam was as close to dead as a person can be, all so that we could keep him from dying.
For the first surgery there is no scar tissue, no doorman to slow down opening the chest, no delays to work around old surgeries. It is as cut and dry as nuclear science—either you do everything perfectly, or you destroy someone’s entire universe.
Yet, as fast as it was in the O.R., the waiting room made time stand still. It lacked TVs, books, magazines, windows, food, or even a water fountain. It was devoid of all links to the outside save a sale ad for a discount store. It was alarmingly similar to the DMV, except we were all alone, the only people waiting.
Our sparse bit of human contact was Liam’s nurse, Mark, who updated us once or twice and prepared Liam’s space for recovery. He would now be closer to the nurses’ station instead of the back corner, where we started. It wasn’t because Mark was being kind—he was moving Liam to the spot where crash carts and fast access were easily at hand. Liam was the most fragile person on the floor that day and as long as his bed was in that bay.
Little more than two hours after we let Liam go, Mark came back to tell us the surgery was a success. Shortly after Mark left, Dr. Starnes debriefed us with surgical details. Jim jumped over the connected chairs to hug him, while I fell into my seat and exhaled. We couldn’t see Liam for at least an hour or two while they stabilized him. They suggested we go eat. With the early morning surgery, we hadn’t had breakfast. But first, we called family in Colorado from the waiting room. Then, we went downstairs to eat and wait. Only, we didn’t know what we were waiting for.