Our son Kade was born in 2018 with a brain malformation called Vein of Galen Malformation (VOGM). Kade’s malformation caused significant brain damage, and as he got older, he became more and more medically complex. Some of his main diagnoses were spastic quadriplegic cerebral palsy, dystonia, hydrocephalus, feeding tube dependency, hypothermia, chronic pancreatitis, respiratory distress, and CVI.
During Kade’s life, we knew our time with him would likely be short. Our biggest difficulty with raising Kade was not in his everyday needs, but in finding a professional medical team who believed he was worth treatment. No parent should ever have to justify their child’s right to the opportunity to live, yet we found ourselves in that position time and time again. It took a long time for us to find a team that we trusted had Kade’s best interest at heart. Prior to that, we had doctors who tried, on more than one occasion, to persuade us to discontinue care for Kade. A neurologist from one of the top children’s hospitals in the country told us not to pursue therapy for him because it would not make a difference. He would never know joy or find solace in us. He would have severe disabilities and no quality of life.
We were not naive in the fact that Kade would have disabilities and medical needs, but in a time when we needed support, compassion, and guidance, we were faced with discouragement, insensitivity, and judgement. We were not discouraged by what the doctors were saying, but more how they were saying it: the lack of compassion behind their statements and the amount of subjectivity they injected while delivering them. We asked the doctors to define quality of life and learned very quickly that we had very different opinions on what quality of life means. These highly experienced, renowned doctors could not predict Kade’s future with objectivity, but spoke of every detail as if it were fact. That was the moment we knew we would need to learn how to advocate to get what our son needed and, more importantly, what he deserved–a chance to experience life.
There were many aspects of Kade’s care that were very difficult for us to navigate due to information that was incorrect, difficult to get, or misleading. This little boy brought us so much joy, yet we were exhausted and emotionally drained trying to get others to see his worth. We founded The Story You Told because we want to help families learn how to access accurate information and resources and to provide emotional support for others on similar paths. We also hope to help reduce some of the financial burden of frequent hospitalizations through monetary gifts.
Thank you for taking the time to read about the story Kade told. We hope to help your family as your child tells their story.
Yours truly,
Kerianne & Melissa
I am the proud Nana of a VOGM granddaughter. Bella has done well so far but even with her the fear is always there. You are rockstar mothers and your son was a precious little boy. I am in awe that with all you have been through you want to help others places in similar challenging situations. I am very interested in supporting your cause. Please keep me in the loop.