Complex and rare medical illnesses can result in traumatic experiences for families. Some medical symptoms are so specific that doctors think that the parents are perhaps lying or causing more harm by not following their suggestions. Medical professionals can make mistakes. This is especially true when they are not familiar with rare diseases. They are human beings who “practice” medicine and therefore errors occur on their end.
A prime example of this would be Justina Pelletier’s case. Two major and well-respected Boston hospitals were engaged in a dispute over the care of the child, Justina. These two hospitals fought a tug of war over her, leaving the parents in the middle of it all.
Justina’s parents just wanted to assure that their child got the best possible care. They never expected DCF to take their child into protective custody. Justina’s case was played out all over the news.
Being diagnosed with such a rare disease did cause speculation and suspicion for doctors which led to DCF involvement. Some of the medical professionals have never treated or seen cases like Justina’s before. It was a hard and difficult case for anyone involved to figure out.
A metabolic geneticist referred Justina to Boston Children’s Hospital from Tufts Medical Center. Justina’s longtime gastroenterologist had her transferred to Boston Children’s Hospital [BCH). Much to the parents surprise, upon arrival at Boston Children’s Hospital, after careful evaluation, the hospitals staff came to the conclusion that Justina’s problem was a psychiatric problem. This decision by the hospital was in conflict with her medical history.
Justina’s parents disagreed with Boston Children’s hospital diagnosis. Her family sought to have her transferred back to Tufts Medical Center. They wanted her to be with the doctor who knew her case and her medical history best. Having their daughters best interest at heart, Justina’s parents were accused of interfering with her medical care. When Justina’s parent tried to take her back to Tufts, Boston Children’s Hospital called the authorities stating that they/Justina’s parents were harming her wellbeing. This action by Boston Children’s Hospital caused DCF to become involved. As a result, Justina was held for 16 months in a psychiatric ward without any type of medication for her mitochondrial disease.
Boston Children’s Hospital staff had thought that Justina’s pain and symptoms were all in her head. They came to this conclusion because she had been an active and normal child weeks prior to the mitochondrial diagnosis which Justina received at Tufts Medical Center.
According to the Boston Children’s Hospital, the decision to send Justina to a psychiatric ward was to benefit her. It was also to get her the help she needed.
Parents whose children have Mitochondrial Diseases face the harsh reality of having medical professionals possibly not believe them. Mitochondrial disease is so rare and hard to detect because of the type of symptoms associated with the disease. Mitochondrial starts off with the individual having less and less energy due to the cell dying. Once more cells start to die and generate less energy, it causes organ system failure. It is so hard to recognize and diagnose because it affects every individual differently. According to the United Mitochondrial Disease Foundation, the “symptoms include seizures, strokes, severe developmental delays, inability to walk, talk, see, and digest food.” This is combined with a host of other complications.
According to the Mitochondrial Disease News, false medical abuse charges by hospitals are becoming more and more common. So common that MitoAtion was founded in 2005, a nonprofit organization that aims to improve the quality of life for children and adults with mitochondrial disease. MitoAction not only offers parents and medical professionals advice on how to diagnose those who have the disease, but also offers parents advice on how to properly communicate with medical professionals so they aren’t faced with negative outcomes.
Due to the lack of general awareness and information over mitochondrial disease, it is so important to find medical professionals who have dealt with mitochondrial disease before, and that as a parent, you know how to properly communicate and advocate for your child.
Doing well for your child can have multiple meanings and outcomes, when you’re involved with hospitals it can often vary between the parents and doctors wishes. There are instances just like Justina case that hospitals are not always generally aware or informed about rare diseases. Medical professionals are humans and can make mistakes when it comes to diagnosing your child. Learn how to properly communicate, ask questions and advocate for you child.