Colin’s Story of Hope and Healing
Colin Michael Jones was born full term on November 30, 2011. He was 7 lbs 14 oz and 21.5” at birth. He joined his family, Bill, Sue (Lill), big brother William (then 6) and big sister Claire (then 1). We had gone to the hospital for what we thought would be a routine delivery and birth. Sue experienced complications during labor and needed an emergency cesarean section. Born with a faint heartbeat, he was unable to breathe on his own and was put on a ventilator. Shortly after birth, Colin was diagnosed with Hypoxic Ischemic Encephalopathy, he does not have the ability to swallow, and he does not have typical control of his body. Within three hours of birth he was sent to Columbia Presbyterian Hospital in NYC for head cooling to prevent further injury to his brain. Once the brain cooling was completed he was re-warmed and promptly returned to St. Joseph’s to meet his Mom face to face for the first time. As Colin’s brain began to heal he developed the ability to breathe on his own and the ventilator was removed. In early January a gastrostomy tube was placed to make his feedings and medication administration more comfortable for him.
On January 10 he was admitted to Children’s Specialized Hospital in New Brunswick, NJ. At Children’s, Colin worked very hard with his physical, occupational and speech therapists. For Colin, and our family, Children’s was a very special place. They gave Colin and our family the ability to dream a bigger dream for Colin. With their help, and the help of the Ronald McDonald House (where we were staying while Colin was in the hospital) in New Brunswick, our family was able to prepare for his arrival home. He was discharged May 22 and adjusted very nicely to being at home. He is much more relaxed and big brother William and big sister Claire absolutely love having their baby brother home!
Colin requires 24 hour attention, and we have two shifts of nursing care at home for 16 hours a day. Colin’s body is still healing and of course growing. Not being able to swallow he is unable to handle the normal secretions we have and he needs frequent suctioning to maintain his airway. He is at risk of aspiration and pneumonia. He will continue with the intensive therapy he received at Children’s Specialized Hospital. As time goes on we will seek out and alter his therapy to accommodate his abilities. Hyperbaric Oxygen Treatment is an experimental treatment that shows promise to people with a similar injury however it is not covered by insurance. We have found a specialized feeding therapist in East Brunswick, NJ. Some of these treatments and services will not be covered by insurance and may require extensive travel. We are in the process of obtaining a special stroller and supportive seating for him at home. He will benefit from a hospital crib and a special bath seat. Some of these will be covered by insurance, some will not. In addition to his therapy appointments, Colin sees many dedicated specialists who are located out of the area. Travel with Colin requires nursing assistance and equipment. In order for this to work for them tremendous resources are needed.
Our goal for Colin is the same one that we have for our two older children, and that is to succeed in life to the best of their own abilities. We are thankful to our families, friends and the entire community who have come forth with assistance, meals and most importantly prayers. Colin’s story has touched many people since his birth; and his story is only beginning.