Have you ever wished that you had a sign on your forehead that read, “Handle with Care,” or that there was part of your personal history that everyone was automatically aware of so they could treat you extra gently with regard to your personal sensitive subject?
Like a personal biography that preceded any encounters you might face—meeting new people, job interviews, PTA meetings, or just standing in line behind someone at the grocery store. Many times in my life I’ve wished I could wear a sign that read “Handle with Care—Mother who has lost a child.”
To honor our deceased daughter Ella, and in an effort to give back to the local hospital where she was cared for, my husband and I have allowed medical students into our home for a 2-hour interview as part of their pediatric residency.
We share our family’s history, the story of our daughter’s traumatic birth causing her severe brain injury and how we meticulously cared for Ella for 11 years. We share our struggles getting Ella educated, our battles to ensure Ella’s rights and needs were met. Most importantly to the medical students, we share our experiences both good and bad with the medical staff who cared for Ella throughout her life. We stress how the attitude and bedside manner of doctors and nurses providing care and guidance can make or break a fragile parent with a sick child.
Quite frankly, a positive or negative interaction with Ella’s medical care providers often came down to the little things that mattered to me as a parent and a human:
- Did the doctor remember my child’s name and my name?
- Did they look me in the eye when speaking to me?
- Did they include Ella in our conversations?
- Did they respect my grief and tears, give me space to express my emotions and not continue to talk over them?
- Did they thoughtfully answer all of my questions?
- Did they take time to read our history in the medical charts before seeing us so we wouldn’t have to repeat/re-tell painful memories of the past?
The medical students ask questions and generally leave with gratitude for the time we’ve taken with them and a medical perspective that they haven’t encountered before.
After Ella’s death in 2014, my husband and I became surprisingly, wonderfully pregnant with my son, Manny.
Manny was due on the one year anniversary of Ella’s death, and thankfully he was 4 days overdue and didn’t have to share his birthday with the heavy anniversary of his sister’s death. Because of Ella’s complicated birth and since I was 40 years old (advanced maternal age,) I had tons of doctor’s appointments and tests to make sure everything was progressing and both the baby and I were healthy.
My midwives and prenatal doctors were great at every appointment, listening to me, answering questions and supporting my fragile emotional state during my pregnancy.
However, one doctor who I saw clearly did not read my records before she examined me. She asked me the dreaded question, “Do you have other children?” as soon as she entered the room.
When I began to cry, she was confused and had to wait for me to calm down so I could explain that I had a daughter who passed away just months before. She was clearly embarrassed by her lack of knowledge of my history and suggested that in the future, when I come in for appointments, I should explain my medical history first to any staff that treats me.
I was livid. “WHAT?” I was stressed, scared, fragile and pregnant and this doctor wanted me to bring up the tragic birth injury and death of my daughter at every prenatal appointment.
Read my chart!
Isn’t there some way to flag my medical records so this medical history comes up first? Or should I wear a Post-it note on my head?
Every time I went to my prenatal appointments, the first thing the nurses did was weigh me and take my blood pressure. My pressure was always sky high and caused the nurses and doctors to be concerned. When everything checked out ok and I heard my son’s heartbeat, we would take my blood pressure again and it was always well within the normal range. After several appointments, I requested that my blood pressure be taken only at the end of appointments to bypass any added stress caused by me thinking my blood pressure was an issue. This was something I had to remind the medical staff of at every appointment.
I can’t be the only human with a painful and traumatic past that requires delicate handling during medical appointments. I think of veterans or first responders who may experience PTSD. What about children who have experienced any of the horrors life can offer our most defenseless members? I know I am not the only one who is hit with a gut-punch of anxiety and pain when asked to explain my past.
During a recent interview with one of the medical students, I recalled the frustration I’ve experienced with doctors who don’t take time to read my medical history before appointments.
As I wrapped up airing my grievances, a shy student explained that there is a new computer program that the hospital is trying out, called Post-it. When a patient’s chart is pulled up on the computer, a large yellow Post-it note appears informing the doctors of important information that will help them connect with the patients that they are treating. Brilliant! I was thrilled to hear this information. So many patients will benefit from this computer program and it will certainly help busy doctors and nurses to connect with their patients. Maybe someday I won’t need my imaginary post-it request to “Handle with Care.”
This past weekend was what would have been Ella’s 17th birthday. I feel her birthday coming on and always spend the week before preparing. Ella’s birthday is, in so many ways, harder for me than the anniversary of the day that she died. Her birthday is filled with memories of the chaos of that terrible day, her birth injury, the terrible mistakes made by the birthing center staff, and my guilt that I didn’t listen to my intuition and insist on a transfer to the hospital.
I spend the week before Ella’s birthday feeling raw, weepy, and sensitive, and I would prefer to stay in bed. I isolate myself and avoid contact, and I only engage with people that I have to during this time. Those people see me as strong and holding it together.
I’m really not holding anything together and would appreciate a Post-it note that read, “Handle with Care ” on my forehead as I move about my life during this sensitive time of year. Just going to the grocery store can trigger me. If I encounter any insensitivity from anyone, I take it personally, as a direct attack and let it harm my already fragile state of being. Heck, perhaps I should opt for a hat with a flashing red light and a sign reading, “Handle with Care.” People might think I’m crazy and stay away, and frankly, that’s just what I want at this time of the year.