When Andrew was first born, his parents Amanda and Nick thought they had a perfectly healthy baby boy. Shortly after coming home though, Amanda began to suspect that something was wrong. She found it very difficult to feed Andrew; he cried a lot, and he often seemed to choke while eating. After lactation nurses were unable to help Andrew improve nursing, Amanda switched to bottle feeding, but this wasn’t any easier.
One day when Andrew was three months old, Amanda couldn’t get him to eat at all and he was very lethargic. He was seen by his pediatrician and blood was taken for testing. Still on the way home from the doctor, Amanda and Nick received a call to bring Andrew immediately to the Nationwide Children’s Hospital Emergency Department. The tests had shown that he was suffering kidney and liver failure; he was dehydrated and his lungs were underdeveloped.
Andrew was in the hospital for 2 months. During this time he was diagnosed with diabetes insipidus. Because this can be caused by a brain tumor, Andrew had an MRI of his brain. The MRI revealed that Andrew had Semi-Lobar Holoprosencephaly, a rare disorder of brain formation that occurs in the first few weeks of pregnancy. This caused Andrew to develop a very serious and dangerous seizure disorder.
Despite this Andrew, affectionately known as Buddy to his family, began therapy. Amanda worked with him daily. He proved to be a tenacious and determined little boy. He continued to grow and develop. He loved to play and he had his favorite cartoons on TV. He particularly loved the evenings when daddy got home. As Andrew got sicker he was referred to the inpatient Advanced Illness Management Team.
At 17 months Andrew had several particularly bad seizures. He was back in the hospital and on his discharge home he was referred to the Hospice Team. Andrew died only a few days after returning home. Despite just meeting the Hospice team, Andrew’s family has benefited from the ongoing bereavement support which is offered to all families for two years following the death of their child. Amanda says, “I would especially like to thank Karen who is the therapist that has visited us regularly since our son died. She has helped to guide us through our terrible loss.”