Karese and Allyn "Her Heart Beats With Resilience"
Photography by Randy Bacon
On November 3, 2011, my life was forever changed. I went in for a routine sonogram and within minutes, specialists at Truman hospital of Kansas City surrounded me. Something was horribly wrong. Murmured voices, crossed arms, confused scowls and tracing fingers on the monitor ensued. I anxiously waited for Allyn’s father to arrive and was comforted by my family. They had come to see the 4D sonogram of our newest family member. Instead, they rushed Allyn’s older sister to the McDonalds on the first floor. After Allyn’s father arrived, we were told our unborn child had a heart defect. We were beyond stunned. What did that mean? How? Wait…what? We had to wait another four days to find out the answers to our questions. Our baby shower was the next day. My sister asked me if I wanted to cancel and I told her absolutely not. From that point on, I was determined to celebrate her.
Tuesday came with the diagnosis…Hypoplastic Left-Heart Syndrome (HLHS). A mental haze set in and I heard nothing after that.
I was told that I had to stop working immediately. I worked as an educator at a childcare facility in Kansas City and the risk of illness was too great to chance. I began a barrage of tests. MRIs, blood draws, EKGs, sonograms…it seemed never ending. Little did I know, I was being exposed to a minute amount of what she would have to endure. I was in the hospital a minimum of twice per week for months. I felt like a human lab rat but the more appointments I endured, the more I began to understand our child’s condition.
Allyn was born on January 14, 2012. She was my third, final and most unique labor. I looked angrily at the incubator to my right, knowing the six-member team in hospital gowns would take her shortly after her arrival. Dazed, I held her tiny hand for a brief moment. I had developed symptoms of preeclampsia, which called for a magnesium drip. I was unaware that I wouldn’t be able to see her for at least 24 hours post delivery. That was the longest 24 hours of my life, or so I thought.
HLHS is a congenital heart disease that affects 1 in 100 births. The condition is most commonly repairable through a series of three, open-heart surgeries. These surgeries include the Norwood procedure and Glenn and Fontan surgeries. Due to the heart’s “marriage” to other major organs, the condition can lead to numerous problems. Unfortunately, this was the reality of what was to come for Allyn. Her first open heart surgery was at five days old. Remember that “longest 24 hours of my life” bit? “Helpless” doesn’t justify a thing when it comes to waiting over eight hours for your newborn to forgo such a surgery. I’ll just leave those feelings right back there.
Over the next six years, Allyn would go on to survive four open heart surgeries, gastrostomy tube, and Fundo surgeries. Also, numerous heart caths, decannulation, Ischaemic Stroke, Cardioembolic Stroke, heart failure, liver disease, adrenal medullary insufficiency, vocal and multiple motor TIC disorder. I’m sure you are getting the point. In every single way, we were all holding on by a thread.
Code Blue…
This is the part of Allyn’s journey that aided in my post-traumatic stress diagnosis. Over the six years of medical care, Allyn coded a total of three times. From what I recall, rounding the corner to see an army of medical professionals resuscitating our child was an out of body experience. Every time, I dropped to my knees in prayer. Every time, time stood still. Every time, my sight faded to the purest form of white and a sense of calm surrounded me. I’ve come to determine that my Spirit left my body and was surrounded by God’s Grace. In a moment of Spiritual vulnerability, He protected her and me. Hearing nothing but a calming silence and seeing white, in the midst of chaos, has to be something of a spiritual realm. In those moments, I saw the medical staff as angelic. Everything moved in slow motion until the ECG danced with her resilient heartbeat. She came back, every time.
On July 9, 2018, Allyn was diagnosed with heart failure. Ultimately, she needed a new heart. After we were asked if we wished to proceed (unsteadily signing of papers for a “yes”) we were thrown into a holiday season of meetings and ultimately, waiting. During this time, I was researching, crying, coping and praying. Praying that she would once again defeat the odds and come off the waiting list. I spoke to her pediatric cardiologist, Dr. Jonathan Wagner, almost daily. We have a bond of truth and truth is what I needed, no matter how much it hurt. I asked him what he thought Allyn’s outcome would be? He stated, “Whatever she makes it. She does everything on her own time.” Some would say that response was “PC,” but I saw it as his glimmer of hope. I asked him for numbers and stats because that’s what makes sense to me. “Ten to fifteen percent chance that she comes off that list, Karese. It’s just not likely.” Well, we took that small glimmer of chance and ran with it! “Let’s GO” became our anthem.
After months of waiting, Allyn had a mandatory heart cath. Results from heart caths come back fairly quickly. Prior caths showed she had a crappy heart squeeze and her internal heart pressure was wreaking havoc. Dr. Cain called a meeting. We went into the meeting somewhat apprehensive. Facts first, fluff later. We sat down to crossed arms and bewilderment. Everything in my spirit ignited as he told us, “She appears to be healing…” All I heard was Dr. Wagner saying, “She does everything on her own time.”
Medicinal weans, moving back and forth from the PICU, and preparing to get out of the hospital ensued. Allyn was released from Children’s Mercy eight months after her Fontan surgery as a “successful” Fontan recipient. She walked out of the hospital with her Fontan Warrior cape, Adidas shell tops or “Magic Shoes” (which she had originally learned to run in) and a smile so big, it affected everyone we encountered on the way out.
Two plus years from that date, Allyn is starting first grade, playing, sightseeing, traveling, meeting new people and thriving. She has moments when her heart gets tired but the simple acts of sitting still or napping usually helps. Appointments have slowed but her specialists are all smiles. I like to think that her case shows them all God’s grace of slowing down time. Throughout those eight months, Allyn definitely did everything on her time. She took gentle care of her body in order for her heart to heal. Allyn’s journey will always be my favorite narrative. It shifts with excitement, yet can become eerily calm. Her hugs are one of a kind. She has taught me nothing short of God’s grace and the warmth that patience can bring. Being her mother is beyond breathtaking and I would do it over 7 Billion times. Her joy of life’s “little things” makes one take notice and her heart beats with resilience so powerful, it could never be matched.
From the staff at Children’s Mercy of Kansas City to family, friends and strangers…we thank you for any and everything you have done to support us through our journey. To fellow parents of Heart Warriors and Angels, there are no words to describe what we go through on a daily basis. All I can ask of you is to hold on tight, to hope, love, accomplishments and memories. One second at a time, if that’s as far as your energy will allow.
We will continue to move forward with the tenacity Allyn has generously shared with us. We will remain full of faith in God and His miracles, as Allyn is just that.
Allyn…#LetsGO!
You can keep up with Allyn’s Journey on Facebook at Allyn’s Journey (HLHS)
As an ongoing nonprofit movement, the ability for us to change the world through people and their stories is determined by the love and support of compassionate people, like you. The photography, films, website, written stories, exhibitions, community events and all other aspects of 8 Billion Ones are made possible by the generous financial support of the "ones", like you. Please consider a tax-deductible gift today to help us continue sharing important, life-changing stories of people - just like you.