Cartoon test tube babies’ parents ‘devastated’ after test tube baby dies
A young baby with a rare genetic disorder has died after his parents refused to let him go to the hospital to have his tubes tested.
Amber Marie Johnson was born with a heart condition in January 2016.
She died three weeks later.
Her parents said they would not let her go to a hospital to receive treatment for a rare condition called recessive amyloidosis.
The family said they had a history of refusing to let their children go to hospitals for treatment.
The condition causes abnormal proteins to build up in the body.
The doctors who performed Johnson’s tests told ABC News the baby had an amylose-protein disease and that they were worried about his health.
They were also concerned that his mother was taking medications to treat the condition.
Johnson’s family said in a statement that they “had no choice but to bring her into our life” because she needed to be in the care of the hospital.
Johnson’s parents told ABC affiliate WFAA-TV that she was in a state of “absolute chaos” after she died.
They said they were devastated by the loss of their daughter and said she would have “been the happiest and happiest person in the world” if they had been able to get her to the medical center.
Johnson was in the neonatal intensive care unit at Children’s Hospital of Philadelphia, where doctors discovered the rare condition.
She was treated for a variety of complications before being transferred to Children’s Intensive Care Unit in Dallas, where she died on Sunday.ABC News’ Elizabeth Palmer and Julie Mauer contributed to this report.