Trisomy Awareness Month copyBy: Teneka Huffman

What if your mailman decided the type of medical care your baby received? Or if your hair stylist dictated when your child would be fed? What if the school librarian decided that your baby would not receive CPR? What if these life-sustaining decisions were made without you ever knowing—especially if your child has a terminal illness?

Sadly, some hospitals have adopted a futility policy, which provides doctors with the ability to refuse healthcare treatments that they deem 'futile.' Ranging from denying nutrition to end-of-life orders, these decisions can be made without parental involvement or approval.

The Missouri House of Representatives is currently discussing a bill that will prohibit hospitals and health care providers from withholding crucial procedures from a minor without the written consent of a parent or guardian. House Bill number 113 is nicknamed 'Simon's Law' after Simon Crosier, who was born with Trisomy 18 in 2010.

Simon's mother Sheryl made some shocking discoveries when doing research for her book I Am Not a Syndrome-My Name Is Simon. The futility policies had allowed the doctors to place a 'Do Not Resuscitate' order in Simon's charts without permission from the Crosiers—without so much as a consultation with the Crosiers. Sheryl also discovered that Simon was receiving nutrition as a comfort measure only...and the 'nutrition' was in the form of sugar water.

Representative Bill Kidd was so moved by the Crosiers' story that he promised his first bill in office would enforce the rights of parents to be upheld in life or death medical treatment plans. Simon's Law grants parents the right to request (in writing) "...any policies relating to a patient or resident, or the services a patient or resident may receive involving life-sustaining or non-beneficial treatment within the healthcare facility or agency." HB 113 also mandates that doctors cannot place any restrictions on life-sustaining procedures including, but not limited to food, medication, or nutrition without written permission from the parents or guardian of the patient.

Simon lived three short months, and Simon's Law was filed on the fourth anniversary of his death. A hearing for this bill was held on February 25th. While the bill is not currently on the Missouri House calendar, another hearing is expected. If the bill passes, the proposed effective date is August 28, 2015.

No one should be making life or death decisions regarding a child without parental involvement. No one. Not the neighbors, the insurance company, or even an educated medical professional. Healthcare decisions are to be made by the patient and their family, no matter how difficult the decisions may be. Simon's Law allows parents the chance to be involved in their child's life...and isn't that what every parent dreams of? If Simon's Law passes, it gives parents the opportunity to work toward extending the lives of their precious children facing dire situations.