Town and Gown: "Joy Comes in the Morning"

06/04/2013

By Heather Greene, a graduate assistant in the Office of Public Relations at JSU

After the adoption of their son, Craig Kelly, JSU alumni David ’00 and Jennifer Kelly ’11/’12 felt that it was time for them to adopt again and had been on the path to adopt for about two years before they met the child for them.

The Kellys chose not to go through an adoption agency, but instead used a former JSU graduate to create a website for them and used word of mouth to get their information out.

Through Facebook, the Kellys heard of a baby who was up for adoption and going to be born with 22q Deletion Syndrome, which is also known as DiGeorge’s Syndrome, the second most common genetic disorder in the world. The baby had been planned and the birth parents were a loving, married couple who, for personal reasons, could not provide the medical care that this baby was going to desperately need.

Jennifer explains, “We had been praying all along that God would give us a baby who needed us as much as we needed him or her.”

The Kellys’ medical background, further research, and an online support group for families with children with 22Q Deletion Syndrome helped give David and Jennifer an idea of what to expect. Also, their son, a voracious bookworm, had been diagnosed with Tourette’s Syndrome and a blood sugar condition, which allowed for the Kelly family to have already made some medical connections in the Birmingham area. Furthermore, in their journey of adoption, the Kellys had begun planning ahead so far as to have a gender neutral nursery and baby items prepared.

“There’s no way to really prepare yourself,” explains Jennifer. “But we also knew that if, in our faith, God was bringing this child to us, He was going to give us whatever it would take to raise her. In the end, we had to make the decision of whether or not to submit our profile…and we decided that even if she only lived a day, she still deserved two parents and a brother who loved her unconditionally during that time and we felt that we were being called to be her parents. So, we submitted her profile and gave it over to God.”

After the Kellys submitted their profile to the family, they were discouraged to learn that they were the second pick. About three weeks before the baby’s due date, the Kellys received an e-mail explaining that the first pick had fallen through and that they were a match if they still wanted to adopt.

Joy Elizabeth Nissa Kelly was born on October 2, 2012 and had her first heart catheterization when she was twenty-four hours old. She spent eight days in the hospital and it took the Kelly family another two days to get back home to Alabama with their new baby girl.

After only six days at home, Joy turned grey and began breathing strangely. She was rushed to the Jacksonville hospital and then taken to Birmingham by ambulance.

With balloons still up from the opening ceremony for the new cardiac unit at Children’s Hospital, Joy became one of the first children on the unit. She was the first to use her specific room and the first to be on extracorporeal membrane oxygenation (ECMO) in the Cardiovascular Intensive Care Unit (CVICU) at Children’s.

During a scheduled surgical procedure, Joy suffered two cardiac arrests in her right ventricle. She was then placed on the ECMO machine, which is basically “bedside bypass and was acting as her heart, lungs, and kidneys,” explains Jennifer.

The Kellys were “blissfully ignorant” of the seriousness of Joy’s situation. After four days on the ECMO, their doctor explained that they would need to take Joy off of the ECMO machine the following day and that there was no guarantee that she would make it; the Kelly family was distraught.

On his way to the hospital after the devastating news, David grabbed Jennifer’s nineteenth century christening gown, which had been in her family since the time of her great-grandmother, and the Kellys had Joy christened by the hospital chaplain that evening. During that unforgettable night, Jennifer explains that they “just cried and prayed all night long.”

However, like her name, joy does come in the morning, as that morning, Joy’s doctor returned to the family in the explaining that he had a dream of what exactly was wrong with her and stated that they would be taking her to the catheterization lab that very day.

After intense collaboration between every cardiologist and cardiologist surgeon at UAB and Children’s Hospital, it was determined that there was a hole in Joy’s heart valve that was leaking 25-35% of blood back into her heart with each pulsation.

On October 31, 2012, Joy underwent another surgery and came off of the ECMO machine on November 2, 2012.

Although Joy has undergone major surgeries and medical procedures and will still need to see specialists for the rest of her life, she has defied the odds every time. As of this publication, she has recently weaned herself off of oxygen, an accomplishment which was not projected to happen for a couple of years.

In her short eight months of life, little Joy has touched the lives of her over ten thousand fans through her Facebook page and has received notes of encouragement from as far away as Denmark, Paris and Australia.

Both David and Jennifer attribute their skills at understanding medical terminology and procedures, which has aided them in caring for both of their children, to the excellent instruction they received while at JSU.

Photo: The Kelly Family-Jennifer, David, Craig, and Joy Kelly (Steve Latham photo).