Perspective. We all have our own perspective into our daily lives and how we move forth on a day-to-day basis. Take for instance my job as the Editor here at the Times-Republican. There are definitely days that seem trying when I struggle to drum up the words needed to bring a story to life. There are times when the job can be daunting and difficult to put pen to paper.
However, there are also those moments with this position where I am completely swept over by emotions and everything about my day-to-day life is brought back into perspective. Moments where a difficult day at work is just that, one very small percentage of my life when in all reality others are faced with trying times most couldn’t even begin to imagine.
Being asked recently to capture moments and memories from a meeting that was a year in the making was an experience that nearly brought me to my knees. It is a story of both sadness followed with joy that very quickly changed my own perspective on how no matter what is happening in our own lives, others around us are moving forward each day one step at a time while facing some of life’s biggest challenges along the way.
On one hand there is a family still learning how to cope while they continue to move forward after the loss of their teenage daughter one year ago, as another family with their young daughter, that at an early age held an uncertain future when she fell ill at just four months old. While one family would be faced with decisions regarding organ donation from their beautiful teen girl, another family rejoiced at the phone call they received learning a donor liver was available to help save their little girl. At the time, neither family knew the other, yet they were already thinking of one another and would soon learn they are forever connected.
While television shows and movies exist bringing forth light on the subject of organ donation, this story hits different from what has been told before. This story isn’t one with actors in an occupation, but instead real people that we know and love.
The story of Suzie Moorman began before her birth 17 years ago when Mark and Heather Moorman learned their sweet daughter, while still in the womb, would be facing complications upon birth.
“When I was pregnant with Suzie it was on a Monday when they thought she was breech and the very following day on Tuesday we found out she in fact had severe hydrocephalus,” said Heather as she began her story.
Suzie’s hydrocephalus condition meant there was a severe build-up of fluid deep within the brain, which causes brain damage. Treatment for this condition includes the surgical placement of a shunt to help drain excess fluid.
Throughout the course of Suzie’s life, she continually proved her strength reaching new milestones along the way that doctors once believed might never happen. Her family, especially her mother advocated for her each and every time something seemed to change or disrupt Suzie’s comfort level or cause her to take a step backwards in progress through the years.
“That was my job, Mark makes the money and would come when he could to the doctor with us, but I have taken care of all the doctor’s appointments through the years,” said Heather.
When faced with a sudden onset of many symptoms including pain, fatigue and more in mid-August of 2020, Heather knew something wasn’t right making the decision to take Suzie to the local emergency room for observation. It was there among friends within the staff at the Wayne County Hospital where Suzie would bring in her sweet 16th birthday as they continued to monitor her.
Following a severe seizure, Suzie was life-flighted to the University of Iowa Stead Family Children’s Hospital. Older sisters Sammie and Sarah traveled with Mark and Heather racing to join Suzie in Iowa City, knowing due to COVID regulations, only Heather would be allowed into her room, however their family could be close as they prayed together for a miracle. Three days after her arrival in Iowa City, Suzie’s little body was unable to fight anymore.
“Once we found out Suzie wasn’t going to make it, we were asked if we were interested in organ donation,” Heather began. “It was a no-brainer for Mark and I thinking absolutely, but with Sammie and Sarah both being over 18, this was a family decision and we were going to decide as a family together. We talked and we all decided absolutely we would do this to continue sharing our miracle with others.”
“Suzie has always been a miracle because she wasn’t supposed to live past three years old,” Heather continued. “She was never supposed to walk or talk, see or hear. We wanted to continue to spread her love and sunshine through organ donation.”
As the team of doctors and nurses worked to keep Suzie’s blood pressure stabilized, numerous tests were performed to determine which organs would be viable for donation. Heather walked with her daughter every step of the way; stopping just outside the door when she knew the procedures beyond would be too much for her to bear witness to as a mother. After the completion of tests, it was determined four of Suzie’s organs were deemed suitable for organ donation including her liver, each of her kidneys and her lungs.
Meanwhile, just six hours north in Richmond, Minn., Aaron and Karsee Schneider, along with their six-month old daughter Evyn, were preparing for their evening’s supper before the phone would ring bearing news that would forever change their lives. Two months prior when Evyn was just four months old, she was diagnosed with biliary atresia which is a childhood disease of the liver.
“Her liver was almost in complete failure at four months old,” said Aaron as he explained his infant daughter’s serious medical condition. “Evyn was a rare case because they said most babies don’t make it past two months without being recognized as having biliary atresia. She was an anomaly because most babies are two weeks old when diagnosed where she was four months old.”
Evyn had slight jaundice at birth, but nothing that stood out as a concern or a sign of what was to come. Throughout all checkup appointments leading up to four-months of age, everything continued to be normal for Evyn with no concerns.
“Then we are at her four-month checkup and seven hours later we are at the children’s hospital in Minneapolis,” Aaron stated.
One week following Evyn’s diagnosis a Kasai procedure was performed in hopes of correcting the liver issue in allowing bile drainage by connecting her small intestine directly to her liver. While it wasn’t to be a permanent cure for her, in many cases patients can continue to grow and remain healthy for possibly years. Unfortunately, Evyn’s failed nearly immediately.
“They told us, just face it she needs a liver transplant and we just kind of thought, okay we have an answer,” Karsee stated. “We were told they wanted a small, pediatric liver.”
Finally Aaron and Karsee received a call stating a liver was available just weeks later, however the transplant at this time wouldn’t take place.
“They said it was a fatty liver and it wasn’t right, and wasn’t the one we wanted,” Aaron said.
“We went all the way down there, had her prepped and was ready to go back and then our doctor said that the liver was not perfect,” Karsee added as she recalled her feelings at that time. “It was hard, but we were thankful it was discovered before the operation.”
As Evyn’s condition worsened and she grew sicker, her need for a liver transplant was dire. On the evening of August 25, the call arrived once more with news of another liver being available. It was with this call the two families; two states apart would forever remain connected in the most special, treasured way.
One family was beginning their grieving process with the glimmer of hope knowing their daughter would live on through others, as another family was hopeful their daughter could now begin the healing journey towards a long, healthy life.
At six-months old, Evyn Schneider received one-third of 16-year old Suzie Moorman’s liver. The names were still unknown to each family, but the families had each prayed for one another.
“I remember the first time we thought about you guys, we didn’t even know you,” Karsee said to Heather. “We received the call for Suzie’s liver and were told to get there now and I was rushing to be sure we had everything and I looked to Aaron and he had a blank look of just nothing. I asked him if he was okay and he said he was just thinking about the family and why we were going there.”
“When they took Suzie beyond the door during her first CAT Scan and MRI, as the door shut, I put my hand on the door and I didn’t move and I prayed for you guys,” Heather said back to Karsee. “I didn’t know who you were and at that time I didn’t know what organs even, but that is when I thought of you for the very first time. I prayed that whoever was going to get her organs could wait just a little bit longer.”
“The timing was perfect and we are forever grateful,” said Aaron as the two families shared their stories in the Moorman home in a room filled with memories of Suzie all around them as her older sister Sarah played with Evyn.
A year has now passed since Suzie walked into heaven and Evyn received the gift of life and love. Through the organ donation process, Evyn received her miracle and is now thriving as she walks, talks and continues to grow at 18 months old.
As Karsee asked Evyn if she was happy to be with the Moorman’s in their home, Evyn enthusiastically repeated, “happy!” With their first meeting now behind them, the Moorman’s and Schneiders are already planning the next as they look forward to growing their bond.
“With Suzie being our miracle, we grieved her death many times through the years through the unknowns and now it is so amazing we could pass her blessing on to others,” said Heather. “I just want to shout it from the mountains. This is our silver lining. We see how important organ donation is. We are now seeing with our eyes and feeling with our hearts how our sweet Suzie lives on.”