Compassion [kuhm–pash-uhn] noun
A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.

Compassion Corner is a weekly series from Patient Worthy that will focus on the subject of compassion in the healthcare and rare disease space. In this series, we explore the role of compassion in this field and what it means for caregivers, patients, and others.

Amanda Kern reflects on the compassion that Dr. Johnson, her son Chance’s neurologist, showed from the day Chance was born. Dr. Johnson diagnosed a severe case of spina bifida about six months into Amanda’s pregnancy.

Immediately after the diagnosis, Dr. Johnson ordered an ultrasound to help Amanda and her husband have a better understanding of their baby’s condition. She went a step further and ordered an MRI of the fetus for optimum clarity.

At birth, when the baby was only four hours old, Dr. Johnson immediately took Chance to the operating room and began the first step in repairing the defect.

Every time Amanda and her husband were told of a new setback, Dr. Johnson reassured them that Chance is amazing and that he will survive each problem that comes along.

Spina bifida is a congenital (disease from birth) defect whereby part of the spinal cord is exposed, which can cause the lower limbs to be paralyzed.

Amanda has thanked Dr. Johnson often, but she took this occasion through her article in KevinMD to tell the world that thanks to the love and compassion shared by Dr. Johnson, her son is alive today.

The family is celebrating the first time in over six years that Chance has not had to visit the hospital during the past year.

Chance had eleven surgeries in the first year of his life. Dr. Johnson was there for each surgery, even for those performed by other surgeons and on her days off. Dr. Johnson made herself available to answer questions even when she was on leave.

She was there all hours of the day or night giving reassurance that the healing process was coming along as expected. That meant also being there every day when Chance was in the newborn intensive care unit.

Never Give Up

It would have been normal to “give up” after being inundated with all the challenges parents of spina bifida children must face. Dr. Johnson not only offered reassurance, but was there at every new occurrence, supporting Chance and his parents.

Dr. Johnson helped Chance’s parents actually become optimistic about his future and trust that he would be an amazing child. Amanda now acknowledges that spina bifida children can and are special and unique. She said that Chance has proven that he is special.

Dr. Johnson has been honest each time Chance needed more tests or surgery, but always reassured his parents to trust his strength and ability to survive.

Amanda’s fervent wish is that parents with spina bifida children are given information that helps them see how amazing their child can be. After an adverse diagnosis, parents should be supported rather than inundated with bad news.

The key to success, according to Amanda, is to have doctors like Dr. Johnson help parents see the rewards that accompany spina bifida. This helps parents become optimistic and proactive.

Amanda and her husband profess their love and devotion to Chance. She credits Dr. Johnson’s tremendous compassion for not giving up.