Friends, family and faith help youngster anticipate serious surgery, recovery time by M. Jill Sundstrom Kendra Gottsleben is small for her age. But what she lacks in stature she makes up with humor, compassion and understanding far beyond her years.
Kendra, 14, is the daughter of Dave and Betsy Gottsleben of Vermillion. Dave is a track coach at The University of South Dakota. Betsy is the principal of St. Agnes School.
Kendra was born with an enzyme deficiency which prevents her cells from �cleansing� themselves. The results affect the body�s connective tissues, corneas and heart valves, along with slowing growth and limiting flexibility.
Still, Kendra has the ability to live beyond her condition.
�She�s small, but once people get to know her, they look past that and see Kendra,� Betsy said. �She is an easy kid to like. She has a compassion and an understanding for other people that you don�t normally see in that age. She often has an adult perspective on things.�
Kendra�s viewpoint of life has now extended to what she must face this summer � corrective surgery to alleviate the effects of spinal cord compression, a condition she was diagnosed with last November.
�The condition is life threatening,� Betsy said. �The compression is responsible for her loss of endurance and it cuts off nerve messages to the brain which can stop her breathing, known as apnea. It could eventually kill her.�
The surgery, tentatively scheduled for June, will be performed by Dr. Steven Kopits, director of the International Center for Skeletal Dysplasia at St. Joseph Medical Center in Towson, MD.
Following the operation, Kendra will have to remain virtually immobile in a �halo� and half body cast for at least five months. She will stay in Maryland during that time in an apartment near the hospital.
Betsy admits it will be a long road. But the path toward the surgery has been a hard one as well.
�In fourth grade Kendra was dancing on the stage with Linda Creehan�s dance class,� Betsy said. �The following year she had difficulty walking and since then has progressively been losing strength in her right leg.�
Doctors first suspected that the problem was Kendra�s hip, and replacement was recommended. Then Betsy noticed increased apnea episodes and Kendra�s breathing was heavier when she slept. Her concern deepened, but she did not know what to do, until she attended one of her husband�s USD track meets.
�I was sitting near a woman whose son was a little person,� Betsy remembered. �Kendra was with me and the woman and I soon began talking. She asked about Kendra�s health and I said she was very healthy except for the problem with her leg and the apnea.�
The woman immediately told Betsy about Dr. Kopits. Still, Betsy was doubtful.
�But as the conversation continued, the woman said we HAD to go see him,� Betsy remembered. �She was sure he could help.
�I carried that around for about six months without doing anything,� Betsy continued. �But by last August, I knew something had to be done for Kendra. I realized I had to pursue this doctor. It was time to find out if he really could help, and if not, we could close that door and move on to something different.�
Kendra and her mother visited Dr. Kopits in November. He barely hesitated to diagnose the problem. It wasn�t Kendra�s hip. Instead, spinal column was compressed. There was no other option but surgery.
�The news was a blow, but the doctor was very reassuring,� Betsy said. �He kept saying ?this is a very dangerous procedure, but it�s what I�m best at. You must trust me.� He also reminded me that we didn�t get to his office alone, and that�s where our faith had to come in.�
The Gottslebens, along with other family members, will be with their daughter for the surgery. Dave, however, will have to return to South Dakota after a month or so, said Betsy, who will remain with Kendra in Maryland.
�Kendra won�t be able to leave for five months,� Betsy said. �She will be in the halo and half body cast at a 40 degree angle for that time. That�s to ensure that the fusion takes. She won�t be able to sit or stand, but her arms and legs will be free to move.�
The long stay � from June until November, at least � will be made easier by the fact that Betsy�s brother and his family live in Bowie, MD, just 45 minutes away from the hospital. Other friends and family members are planning vacations to visit.
�We will and have had lots of support from friends, family and co-workers,� Betsy said. �And Kendra�s friends are the main force that�s keeping her spirits up. She�s experienced nothing but kindness from them.�
Kendra has also been boosted by the presence of her �angels.�
�Kendra lost a friend last summer, Julie Reetz,� Betsy said. �She hangs on to Julie�s memory, writing and dedicating poems to her. I think that helps her cope with the reality of the surgery. I lost a good friend, too, in December. Kendra recently told me that she now has two angels watching over her.�
Kendra�s faith serves as an inspiration to her mother, too.
�When the option became no option but this surgery, Kendra�s strength is what has helped me,� Betsy said. �Faith and prayers have helped, too.
�You still ask the question why,� she continued. �But this is what God has chosen. He has also provided us with love, support and Dr. Kopits. Somehow it all works out.�
Despite the worries and anxiety that the prospect of surgery bring, Betsy wouldn�t change what life has brought her family.
�Kendra is a gift, we�ve always thought of her that way,� she said. �She�s brought a lot of joy to a lot of people�s lives.�