18 Jun Parenting after Loss-Perspective of a Mother and Pediatrician
When my son Conor died suddenly and unexpectedly at the age of 17 months, my world was shattered- both as a mother and as a pediatrician. I was forever changed. My daughter was 2 at the time and I soon realized that parenting was a new journey. There was the added complexity of being a pediatrician and trying to balance what I knew from my training and experience with the gaping unknown. There was nothing in my pediatric training or experience that prepared me to deal with the loss of my son and how to parent my surviving and subsequent children. I realized that just as I could not be the same parent I was, the medical care for my children would not follow the same path. The following is my perspective on this new parenting journey, from the eyes of a mother and physician.
After the sudden and unexpected death of a child, parents and the medical professionals handling their care are faced with many questions. These questions make the care of surviving and subsequent siblings complicated for both parents and the physicians treating them. When we cannot understand why our child died, we are plagued with the “what ifs,” and filled with fear for our other children. The challenge for physicians becomes how to sensitively address the fears of these families, while also not increasing anxiety for the family and exposing the children to unnecessary tests and treatments.
SUDC families often have triggers related to any symptoms that share the symptoms of the child that died. For some SUDC families, this can be a fever. As a pediatrician, I have recited my “fever talk” a million times, “Fever is a good thing. It tells us your child’s body is doing its job trying to fight an illness.” While I still believe this is true, as an SUDC parent, I have a new understanding for the fear fever can bring. On the morning he passed away, Conor had a fever of 102. Other than a mild runny nose, he had no other symptoms and appeared in good health. He passed away during his nap later that day. While I do not think the fever caused his death, when my daughters have fevers, it induces fear and flashbacks. For physicians providing care for SUDC siblings, it is important to understand that fever may have other stress reactions for these families. They may benefit from more visits for seemingly straightforward illnesses. Their child’s death defies medical explanation and therefore it is difficult to reassure them that this will not occur again. However, there is comfort in knowing that to date, there are no known cases where an SUDC sibling has experienced sudden unexplained death, according to research published in the Journal of the American Medical Association.
The same research indicates an increased rate of febrile seizures among children whose deaths are categorized as Sudden Unexplained Death in Childhood. Traditionally, in pediatrics, we have always been taught that simple febrile seizures are benign and do not require further evaluation or treatment. In the majority of cases, this is likely to be the case. However, it is clear that there may be a subset of children who require further evaluation. Given these findings, for SUDC siblings who experience a febrile seizure, a consultation with a pediatric neurologist should be discussed. However, due to lack of medical awareness of SUDC, when these children experience a febrile seizure, there may be obstacles in receiving this care.
Due to this lack of medical awareness of SUDC, SUDC families often bear the responsibility of educating their physicians. When one of their children becomes sick and they see a new physician or visit an emergency department, families may have difficulty in conveying their experience of SUDC and their needs. Therefore, we have created SUDC urgent care cards (pictured below) to help educate about SUDC in these tense situations and refer the provider to additional resources.
In medicine, as it is in life, we do not like the unknown. When we can understand and explain something, we can often prevent it. There are no known causes of SUDC and therefore physicians do not have the ability to screen at-risk children. With the current knowledge we have about SUDC, the best we can do is advocate for more research to identify these causes and ensure that families receive optimal medical care and support in navigating this difficult journey.
For families interested in obtaining SUDC Urgent Care cards, please contact the SUDC Foundation at 800-620-SUDC or firstname.lastname@example.org.