Friday, March 13th 2020: 13 years after the day that changed everything for our family:
It was 13 years ago today, at about this hour, that our lives were forever changed, when our only child, Allison, received her heart transplant at the age of 16.
To attempt to retell the whole story here would not allow the space needed to tell the whole story in a complete way. So please allow some abridgment for the purpose of brevity.
When she was born, on our second wedding anniversary, our daughter was diagnosed with a major heart defect. At the time, pediatric cardiology was light-years behind where it is today. But we were assured by our new best-friend, Dr. Maria, Allison was “a fixer”. But we were in for a long series of ordeals.
When she was less than six weeks old, Allison had her first open-chest surgery, as the doctors placed a restrictive band around her pulmonary artery, to prevent damage to her lungs from over-pressure in the vessels of the lungs. This surgery would allow Allison to grow until we could determine “the next step”.
Less than two years later, we found ourselves in Portland, Oregon, for a surgery called a “Full Fontane”. The surgery re-routed vessels using shunts and reconfigured blood flow so that proper amounts of oxygenated blood would flow to her vital organs and her extremities, as well as her head. The surgery was lengthy, perhaps 6 or 7 hours, and when it was complete, we were furnished with a list of possible complications which “could” occur within the next 5 or ten years.
A week later, we were able to fly home to Alaska! But within a month or two, we found ourselves frequent visitors to the hospital, where that list of complications quickly became very real to us. Heart arrhythmia, especially rapid heartbeat and shallow breathing occurred, and after a few more weeks, issues surfaced with her digestive tract.
These problems, especially the digestive problems, grew more severe over time. What that indicated was that there was a physiological problem with the surgery. over the course of the following year, we had to race to the emergency room on a few occasions, the worst of which were very close calls, where Allison was very near full cardiac arrest. In these instances, I became less of a parent and more of a drill instructor of ER personnel and throughout the ordeal I learned volumes about pediatric cardiology and what “normal” should look like for a young heart patient.
Susan and I were particularly drained by the third instance of this, and so I began dictating to the doctors the way things would work until we KNEW what the problem was and it had been corrected. We would not be taking Allison home until this was complete.
It had become clear to me that there was a direct correlation between Allison’s digestive problems and her heart. And I refused to allow even the top cardiologists in the state to dismiss that observation. I insisted that we bring in gastrologists to evaluate the issue and address it, and to brainstorm withj the best cardiologists on the planet regarding the nexus between the Fontane surgery and the condition in her gut.
Specifically, she was not really “digesting food., It would simply pass through her looking the same going out as it did going in. The condition is called “protein-losing enteropathy”. P.L.E. for short. And it indicates a breakdown of the small intestine, which meant she was badly malnourished. They had to do regular infusions intravenously of Albumin and Lipids to furnish her body with the basic building block for cell growth and muscular tone. Her gut was, in essence, starving her.
By the time we found the problem, and the collaboration of doctors led to proper diagnosis, they decided to schedule Allison for an exploratory heart catheter procedure. And yes, it had to be scheduled for Allison’s 3rd birthday(our 5th wedding anniversary). And as fate would have it, I was 350 miles away, calling the Alaska High School State Basketball tournament in Fairbanks. My dance card was filled with 24 games broadcast over three days. I was reliant on frequent phone reports from Susan, often relayed to me through radio station personnel manning the controls while I called these games.
By the end of that day, the good news was they had found the problem, and were addressing it. A small hole, purposely made between the left and right atria in Allison’d heart(called a fenestration) had grown closed as she grew over the course of the year that passed after the Fontane surgery. That hole had been placed to relieve her pumping chamber from reaching too high a blood pressure to the vessels in her gut. The fenestration closing meant that damage was being done to her intestines, resulting in her mal-nourishment and digestive dysfunction.
All of this information was filed away in my memory. I am fortunate to have seen what we saw back then. It would prove very useful later.
The simple solution? 1- re-open the fenestration, and 2- heal her gut with special formula fed by an NG tube into her belly, and give it time to heal. That worked splendidly. And after months in the hospital, Allison and Susan finally got to come home, where Christmas present still sat unopened beneath the tree in late April, as the trip to the ER occurred two days prior to Christmas.
Time went by, Allison grew and we were blessed with about ten good years of growth and normalcy before familiar problems would revisit us.
Eleven years later, as Allison turned 15, and entered her Sophomore year in high school, the P.L.E. resurfaced. As we recognized the symptoms, we knew that indicated that we were proceeding toward a new phase in her treatment.
Allison had a much harder time attending classes at school, and she was growing more weary each week. She had begun participating in drama class, and was in school plays. But it took a hard toll on her.
We began to see a cardiologist in the region of Nebraska we lived in, and mentally began preparing for the road that we knew lay ahead. Allison would need a heart transplant. We always knew that this day would come at some point.
As the weeks went by, Allison had to visit the hospital across the street for infusions, proteins and lipids to replenish her body of the nutrients she was not getting from the foods she ate.
ON January 23rd, 2007 we left the house at about 7am, headed to Scottsbluff, 124 miles northwest, to see her cardiologist. The day was filled with waiting in waiting rooms, waiting in the room to see the doctor, and eventually seeing the doctor. It was a short visit. He was making the call within a few minutes. At 4:30pm, we left his office, driving to Denver, Colorado, where Allison would be admitted to the Transplant unit at Children’s Hospital in downtown Denver.
A day later, the staff at Children’s had hooked Allison up to IV’s. Allison’s belly had been distended in the same way you see starving children in Africa. It is a case where the body is literally robbing your muscles and bones of nutrients it is not getting from your diet. They were able to medically get the water weight off of her in two days, and her weight plummeted from 141 pounds to 87 pounds on her 5’5″ frame. She was thin as a rail. Her arms were like toothpicks. it was shocking to see how badly malnourished she was.
Once they drained the excess fluids on her belly, they fed her intravenously, and the long wait began. First, she had to be healthy enough for surgery before she could be placed on the waiting list.
Once that happened, we learned many things we would need to know to sustain her while waiting for a phone call or pager beep. For far too many kids, that call doesn’t come in time. But for us, weeks passed, and we would visit her Transplant Coordinator each week to track progress and ask questions.
We had become residents at the Ronald McDonald House, located across the street from the Children’s hospital.
Then on this day, March 13th, 2007, after we visited with her transplant Coordinator, we asked what would happen if and when the call does come. it was about 10:00am. We were told “the phone never rings during the day”. Those words were practically hanging in the air like a cartoon caption as we went about the rest of our morning. I was stretched out for a scheduled back massage, when I heard the familiar cadence of my wife and daughter conversing as they approached the massage room.
Then, they burst into the room with “you know how the phone never rings during the day? Well it just rang!”
The rest of that day became a blur of activity, and extraordinary people converging on our daughter. Cardiologists. Anesthesiologists. Phlegbotamists, Nurses, orderlies, and more than a few administrators, paper-pushers, and counselors and ministers.
By about 2pm she was in surgery. Then the “real waiting” started. They had to determine if blood type and tissue-types would be a match. They were. Then they had to prep for surgery. The most radical kind of surgery anybody could undergo. heart and lung machine, opening the chest, getting through scar tissue which had grown inside for 14 years. the minute details that go into this surgery are front and center in this kind of procedure. Everybody has a specific job, and they are all the very best at what they do. A NASCAR pit-crew, but their jobs are far more consequential than pit-crews.
8 hours later, doctors emerged and explained that the surgery went well, and that we would be able to see Allison in about half an hour, but that she would not be awake for hours.
The weeks that passed after this day, we witnessed a kind of re-birth, as Allison grew stronger, more confident, healthier and freer than we had ever seen before.
The pictures tell the story of a life, forever changed by the miracle God delivered through medical advances, tragic happenstance, and providential irony.