Today on Always Andy’s Mom, I talk with Shan, whose first-born son, Max, died at 15 months of age from Sudden Unexplained Death in Epilepsy. Max was a healthy, growing boy until having his first seizure at 8 months of age. Over the next few months, they adjusted medications and appeared to have his seizures under good control. Then, suddenly, Max did not wake up from his nap one day. Shan and her husband were devastated. Their perfect, newly formed little family was destroyed.
Shan’s story is especially unique because, because, like me, Shan is a physician. In fact, Shan is a psychiatrist completing her fellowship in Child and Adolescent Psychiatry. You might think that a psychiatrist would have all the answers about grief, and would be better able to understand the grief process and what is going on more easily that the average parent. In some ways, I guess that is true. She does have more ‘head knowledge’ about therapy and different ‘normal’ thoughts that people experience with grief.
On the other hand, she was just as completely devastated as any other grieving parent. She started crying when she woke up in the morning and cried herself to sleep each night. While dealing with her own grief, however, she also had work on finishing her psychiatric training. Shan shares with us how much she has learned in the months since Max died and how it has affected the type of psychiatrist she has become.
I have not had a chance to listen to this podcast yet, but plan to tomorrow. I found the SUDEP institute to be a good and supportive resource. I hope that Max’s mom is aware of this as a resource. I specifically spoke to Sally Schaefer. They have their own grief counselor too. SUDEP is getting more publicity after Cameron Boyce (a famous actor) died from SUDEP in July of 2019. It has previously be under reported and we know things need to get reported to get research dollars. Anyway, use passing this along. Anne Cathryn didn’t specifically die from SUDEP, but from drowning when she had a seizure in the bath tub. Yet still the SUDEP institute was helpful, compassionate, and interested in her story as it was a death related to epilepsy