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(Posted December 7th 2015 @ 11:25 AM by: Melody Reever)
Steven was born on a beautiful day in July, in the country Island of Fiji where we were doing missions work. I had a long and problematic pregnancy and had to go on bed rest. By the fifth month of gestation, the doctors thought he wasn't growing properly. After an ultrasound, we found out that his femur was five weeks behind on development, compared to the rest of his body. We had no idea what to expect and no specialist could help us with all our questions. I had hopes that the doctors had been mistaken and he would be fine once out of the womb.
The day finally arrived when we got our baby boy. But at the first look one could tell that he had chronic problems. Steven looked like an old man. He was yellow with purple colors around his mouth and nose. He weighed about three pounds. His head wasn't totally formed and he had a caved-in or sunken appearance of the chest, which we later learned was called "Pectus excavatum." He had an extra finger in his hand that got operated on and his thumbs looked like fingers.
We were discharged from the hospital four days later and took our baby home. There were no clothes for premature babies in Fiji, but even the few we got as gifts from friends from Australia were too big. Contrary to my hopes, Steven didn't get better. Instead he got worse. At two months, when we took him to the doctor, she basically said, "Let him go and have another one." That's when we realized we had to come back home and leave the work that we loved.
Steven was hospitalized the week before we left Fiji. I slept on a dirty floor beside his incubator, which still had blood and milk stains from the previous occupant. The doctor’s ego was hurt when we told him we would bring Steven back to the US. He didn’t want to give us the release to travel. When the day of our departure arrived, my husband came to the hospital, took Steven and me from the PICU, and we drove straight to the International airport.
There is so much I would like to say about returning to America. At the Los Angeles airport, a stranger bought a balloon and sought us out to give it to our son. Children’s Hospital felt like a five-star hotel. What a change; what a wonderful experience! The love and care gave us hope.
Our first stay at Children’s was for a little over two weeks. Besides the many tests to find out what kind of medical help Steven needed, we also tried to find where he fit in the world of syndromes. It was three months later when the geneticist finally broke the news to us that Steven was probably the twenty-fifth known case of "De Barsy Syndrome." This syndrome has many symptoms, including premature aging. He had cataract surgery at six months of age. He wore braces for his hands and feet and a TLSO brace for his torso because of scoliosis. He had a chronic case of acid reflux and was very susceptible to pneumonia.
In 2010, Steven started having some episodes when his heart rate would go up to two hundred beats a minute. During that time, he would break out in a sweat and turn ash gray. It was very scary for me and his school teachers. I took him to the doctors many times but got no satisfying answers. At that point, I felt like the doctors had given up on him.
In March 2011, I noticed his left elbow was swollen. Afraid of being something related to his heart, we quickly took him to the hospital. There we found that his arm had been broken for two weeks. Nothing was done for him except a sling to support his arm through the remainder of the healing process. But from then on, his bones started to break and he spent most of the year at Gillette Children’s Hospital in St. Paul, Minnesota. Steven wore a Spica cast (that covered his lower body and went all the way up his back) most of that summer. For the few days he spent at home, we moved his bedroom into our living room.
In June that year, Steven came down with pneumonia. He had just gotten back from the hospital after having a rod placed on his femur. We just about lost him that night. My husband called 911, and they took him back to the hospital where he was intubated for three weeks.
At the end of 2011, we were told we would bring Steven home with nursing services. Since then we’ve met many wonderful nurses, many of them right out of nursing school. The nurses quickly learned that Steven loved going to church, and they made sure he didn’t miss a service. We never forced church on any of them, but naturally they all heard the gospel. That’s when we met Margaret, Steven’s RN, who will tell her story:
"When I met Steven and his family, I was immediately challenged by the kind of love his parents had for him. I knew they loved him dearly. The house atmosphere was calm and I could tell there was something special in this home. This family ministers to nurses by their lifestyle. As I continued to care for Steven, I had an opportunity to hear God's truth at the church during the times I accompanied him to church. When Steven goes to church, he has joy and radiance that I desired to have. He has spoken to me many times through unspoken words and through his encouragement and desire to live. I started searching for the truth and finally in November 2014, I found Jesus through Steven. I am so lucky to have met this wonderful child who is also a friend of mine. He speaks to me each time I see him and has changed the course of my life forever."
Ageane Reed attends First United Pentecostal Church in St. Paul, Minnesota, with her husband, Thad, her son, Steven, and his nurse, Margaret.