To the Doctor Who Told Me Not to Get Attached to My Baby

by Ilyce Randell

Dear Doctor,

You told me my 5-month-old baby had been born with a fatal illness called Canavan disease. You said he would become “vegetative” and die before his second birthday. You warned me not to become attached to him and instead find a nice pediatric nursing home. You told me there was absolutely nothing that could be done to help my beautiful son.

I didn’t follow one word of the instructions you gave me. Rather than accept the inevitable outcome you described, I chose to fight for the life of my baby.

I hated you that day. You casually and coldly tried to end all hope for love, happiness, and a future.

I no longer hate you; I pity you. Your words were a reflection of you, your background and experience with life. Your words have nothing to do with my son’s potential or value. I was able to recover from that last appointment with you pretty quickly and begin my quest to save my baby, a baby you saw no point in saving.

My son turned twenty years old on October 9, 2017. He graduated high school two years ago and is now in a wonderful work program. I was in tears hearing his teacher speak about him and how everyone at school loves him. The teacher also mentioned how intelligent he is and how he even made improvements in math as a senior. She told everyone how much of an impact Max has had on the staff and students.

Max is nonverbal and disabled, but even with everything against him, he’s shared himself with others and made an impact on his own…without me by his side. This is more than I ever dreamed possible. He’s happy and lives a meaningful life full of activity and an abundance of love.

So to the doctor who told me twenty years ago not to become attached to my baby and look for a nursing home where he could die without “disturbing” the family, I say this: you should really be more careful about what you say to parents when giving them a horrible diagnosis. I understand you don’t want to give false hope, but some parents might believe what you say and do exactly as you recommend.

I wish you could have been at Max’s graduation. The boy who had no hope and no future is a happy, well-adjusted young adult. I hope knowing this would help you do a better job of delivering bad news in the future.

Author: Ilyce Randell • Date: 2/19/2018

About the Author

Ilyce Randell is the mother of two children, one typically developing 14-year-old boy named Alex, and one 19-year-old boy named Max who was born with Canavan disease. She has been working to help families affected by Canavan disease for over 19 years by advocating for patient rights, raising money for medical research and increasing awareness about Canavan disease. Ilyce has recently launched the world’s first international Patient Insight Network (PIN) for Canavan disease through a partnership between AltaVoice, (formerly PatientCrossroads) and Canavan Research Illinois. This tool is critical for advancing research and networking patients worldwide. Ilyce is also the President, Director of Patient Advocacy, and Cofounder of Canavan Research Illinois and Canavan Disease Research. You can read her blog War Stories from Holland

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