Mackenzie's Story

Mackenzie Irene Maroney became the most precious birthday gift a mother could ask for. Mackenzie and I will always celebrate our birthdays together with joy and triumph as we remember how hard she fought for her life for so many years. Mackenzie was born 14 weeks early on April 21, 1993 weighing 1 pound, 12 ounces (790 grams). Her two big brothers had been born at term without any major problems, so my husband and I were very surprised by her early birth. Although the doctors prescribed medication and bedrest to stop my early labor, infection and an abruption of the placenta won. 

Mackenzie spent almost four months in the Neonatal Intensive Care Unit (NICU) at Presbyterian/St. Lukes Hospital in Denver, Colorado. I remember the first time I saw her; her tiny, scrawny body looked like a baby bird's. But her dark, curly hair with a carefully placed pink bow made her human and the most beautiful baby I had ever seen. During her 108 days in the NICU, she lived through lung disease, heart problems, infection in her blood, poor growth, eye injury, blood transfusions and a serious aspiration of formula into her lungs. One sentence can't begin to sum up the many months of heartache, nor the intense suffering experienced by one exceptionally strong little girl.

Mackenzie's struggles did not end once she came home from the hospital. As a NICU nurse I thought I could handle any medical needs Mackenzie might have, but I quickly learned otherwise as we were swept into a whirlwind of specialists, therapists, and medical supply companies. We were overwhelmed by caring for a child on oxygen; using various machines to measure her heart rate, oxygen levels, and her ability to breath properly; and the constant need to watch her for illness. When she stopped eating only days after coming home, we began feeding her through a tube placed in her nose. Four weeks later, doctors performed surgery to repair her Gastroesophageal Reflux (GER), a problem where her esophagus and stomach were not working properly. A button (a tube on the outside of her abdomen connecting to the stomach) was placed during surgery for supplemental feedings. Mackenzie had learned early in life that it hurt to put things in or near her mouth. She had experienced so much pain from the all the tubes placed in her mouth in the NICU, and the pain of her GER that she refused to eat, developing what is called an oral aversion. The one peace we had from these months of stress was the beautiful smile Mackenzie gave us only days after her surgery, when her pain had finally stopped.

At eight months old, Mackenzie came down with Influenza and RSV simultaneously and was hospitalized for five days. Thankfully, she received Respigam (an experimental drug at the time, used to prevent or lessen the symptoms of RSV) which saved her life. After her hospitalization, her oral aversion worsened, and she refused to eat anything. As therapists worked to teach her that it feels good to put something in her mouth, the nighttime feedings given via a pump through her button lasted for two and one-half years and daytime tube feedings for over three years. Our days were filled with special feedings, therapist visits, doctor's appointments, medications, and endless phone calls handling insurance claims. At eleven months of age, after her Respigam treatments were completed (per the study protocol), Mackenzie came down with a serious pneumonia that required a ten-day hospitalization and six weeks of home nursing. Three months later the doctors started her on monthly immunoglobulin (IVIG) intravenous infusions at National Jewish Hospital. IVIG helped boost her immune system so she could grow healthy lung tissue.  For the next four years Mackenzie endured monthly IV infusions, two more surgeries, being attached to a 50-foot oxygen cord, constant therapy visits for her developmental delays in fine and gross motor skills, speech, and her sensory integration issues. Mackenzie was (and still can be) an extremely picky eater.  Many years were spent balancing how much to push her to eat and when to back off, an extremely stressful, but now successful process.  Even as a teenager she doesn’t feel hunger the same as others do.  She can ignore her hunger easily, but we are worry free in knowing she understands her need for nutrition in her life.

The challenges of prematurity were evident in her learning as she went through school.  Understanding and catching on to concepts took longer.  We watched her closely over the years for learning problems and we were proactive if she showed any issues.  Fortunately, she has found her passion in life in her love of photography.  She is extremely talented and sees something through the camera that the average person doesn’t not see.  One feels emotion when they look at her work, her heart shines through in her pictures.  Her dream of attending a photography school is soon to come true.

Mackenzie's affectionate nature and love of life charms everyone she meets. Her two big brothers, Frankie and Michael, painstakingly watch over her safety, but they do not hesitate to push her through life, keeping her tough, yet being compassionate when she needs it. Mackenzie is now in high school, thankfully the events of her life seem less significant than they did in her early years.  We are fortunate that she has few long-term complications from her prematurity and the many early challenges she faced.  She is thin, still a picky eater, and school is more challenging at times than it might have been, but overall she is a healthy, sassy, social, and a beautiful human being both inside and out. I attribute much of her success in life to the abundance of love we gave her, our being proactive with her care, diligence in staying on top of any issue we recognized, and being open minded regarding her treatments.  We have used a variety of alternative therapies over the years including Homeopathy, Acupuncture, and Energy Healing Techniques.  Without the broad spectrum of healing modalities I do not think she would be in the healthy place she is today. She is an amazingly caring person and I am honored to call her my daughter.  She has taught me more about life than I ever could have dreamed of, for this I am grateful.  Mackenzie is the love of our lives and will forever be an inspiration for her courage through the many battles she has fought and won.

Song: Hero
By Mariah Carey