My friend, a fellow loss mama, whose daughter had a fatal diagnosis in the womb was told by the doctor that she wouldn’t want to see her daughter and certainly shouldn’t let her other children meet their sister because “she will look like a monster.”
Today, I had a doctors appointment for a sleep study. I went with my 3rd child, Dex; he’s 6 months old. The doctor asked if he was my only child. I informed him that my first died, and I also have a 20-month-old. He asked how she died, and I told him it was unexplained “Sorry to hear. Must have been something chromosomal. Nature has a way of taking care of these things”.
“These things”? I thought.
Her name is Joislen.
Nature didn’t take care of her.
Two-thirds of stillbirths are explained.
Chromosomal issues would fall into that category. Cord issues and accidents. Infections. Placental insufficiency. Preterm. We all know the exhaustive list. many of us lost our children to a known reason. When it is said 1/3 of stillbirths are unexplained—-it doesn’t really matter that you went to school for a long time. Countless other people who went to school for a long time and have spent an entire career studying this have arrived at no answer for some deaths. You don’t get to play God. You don’t get to give me reason where there is none. You don’t get to tell me my daughter was broken when she wasn’t. Your mind needs to have a reason. But I am fully confident in embracing that an MD doesn’t know it all.
Everything doesn’t have an answer. I accept that. Can you? Don’t project your need to understand everything on my aching heart. You cannot explain it away. She died. And no reason in the world is responsible for her death. That’s what unexplained means.
When he realized my BMI has jumped by 10% in the past 5 years he inquired, “now why did you go and do that?”
I handled the situation. He was remorseful. We moved on. But he has encouraged me to write this.
Dear Healthcare Professionals,
Thanks to those of you who do your jobs with kindness and compassion and treat loss mamas with respect, this is not for you.
When someone has told you their child has died, and you are a healthcare professional, acceptable things to say are:
- I’m so sorry.
- That must have been hard.
- You are such a strong mom.
If you’ve experienced a VERY SIMILAR experience, AFTER acknowledging the patients loss and saying something kind, it’s okay to connect. “My sister was stillborn. I always think what it would be like if she was here”
It is NOT okay to try to one up their grief. Compare it to something irrelevant. Minimize it by saying you understand. Or share happy news. “Well, I had 5 miscarriages. I know how you feel”. “I once had a patient whose baby almost died but I was able to save him!” Or my favorite one—those are literal quotes by the way, not examples—“My wife was made for having children. We have had 4 and she had no issues at all. She handled pregnancy so gracefully.” This was immediately after telling him about my history when he inquired.
If you cannot connect, think to yourself, “What would I say if this was a family member I hold dear?”
If you have never taken sensitivity training and compassion isn’t innate for you, for the love of your license, please, invest. Because strike one I handle. But strike two? Mama bear is going to roar, and your institution will know what you did.
Check your prejudices. Ask yourself, “Would I say this if…
- This person was a different gender?
- Looked different?
- Was a different age?
- Belonged to another culture?
- I was being audited?
Ask yourself, “Am I too comfortable at work?”
I had a nurse ask me in front of a lobby full of people, “So, what makes you high risk?”
I’ve had a nurse tell me, after feeling failed by some healthcare professionals, “You need to trust us to do our job. We are watching, and they’re not going to let you do this in labor and delivery (L&D).” I asked to see the screen of my child’s heart patterns. (L&D was thrilled to let me watch, by the way, and even educated me on something I didn’t know). Nevermind that I was a nursing student at the time, eager to learn. I was a mother who lost a child, carrying hope again, who wanted to control one of the only things I could. I wanted the monitor to point in my direction. It wasn’t to insult her expertise, it was to calm me—which is something she could never do.
“How many kids do you have.”
“Three. My first died.”
“Oh, so you have two”
I’ve had a doctor tell me weeks after losing a child that I was depressed.
I had a team of nine midwives see me during the pregnancy with my daughter for nine long months, and not one called me after she died. Not one.
Why am I sharing?
Because I want insensitive healthcare professionals to think twice before saying the first thing that comes to their mind. I want them to realizing the lasting impact that their bedside manners, or lack thereof, can have on a patient.
And to other loss mamas, I say: ADVOCATE FOR YOURSELF.
When someone in a lab coat comes at you half crazy, I want you to handle it. Through the tears. Through the shame. Demand to be heard. Say your truth. Say it until they realize that it’s not okay.
No longer will we be silenced.
No longer will we chuckle off horrible things said. Horrible looks and situations.
There are so many times in our lives where we can’t fight. When our health is on the line, we have to be the voice. Obviously, some medical and nursing schools will not teach what only humanity can. I write so you all can share your stories. It will be cathartic for us to support one another through the reality that we have been greatly wounded by those who were supposed to help us heal.
There are times for sharing about the amazing hospital staff, but this is not that time. This is a time where victims of people abusing their power can speak out. A time to share our trauma compliments of the ones we should be able to trust the most.
Certain professions allow you some off days more often, but in the healthcare profession, these types of inglorious utterances should not be commonplace. Sadly, they are.
Be kind. Be compassionate. Be strong.
Trish-Ann, a Loss Mama