People often ask me what I want people to know about stillbirth. As Pregnancy and Infant Loss Remembrance Day is approaching on Sunday I feel I’m finally ready to share what I would want people to know.
Stillbirth happens way more often than people think. 23,600 families are affected by stillbirth every year in the United States. That equals out to about 1 in every 60 pregnancies. That’s one baby out of every sixty that won’t have first birthday parties or laugh for the first time. That many families will have to plan funerals instead of welcome home parties from the hospital. That many families will leave the hospital without their babies in their arms, and will forever feel empty.
Those affected by stillbirth will most likely always have questions. Why did it happen? What caused it? Why me? What did I do wrong? Could I have prevented this? And for some, they have most of those questions answered. Then, there’s me that didn’t get answers. There was no explanation as to why. Sure, the actual cause of Isaac’s death was Placental Abruption. That is normally caused by heavy drug use or trauma; such as a car accident or fall. None of that happened to me. Sometimes if there’s bleeding they can catch it in time to save the baby. I had none of that either. The way Isaac’s placenta was, the blood was trapped behind it so there were no indications something was wrong until it was too late. Questions. So many questions I’ll never have answers to.
I would also want people to know that the guilt you feel when your baby dies is suffocating. You question everything. Our innocence is gone. There will never be a “normal” pregnancy again. Every time someone announces they’re having a baby I immediately hope theirs doesn’t end like mine did, and their baby lives.
I would want people to know that the silence sticks with you forever. Yes, the room was completely silent when Isaac was born. There were no cries of life or laughter that you did it. It’s actual silence. But, more than that there’s also the people you thought would be there to support you that weren’t. How angry that can make you.
On the other side there are those few people that you never would have guessed would step up and be there for you. The surprise heroes who stood by you and let you cry, talk or just sit with you and say nothing. The people that not only stood by you, but figuratively held you up when you didn’t think you could keep going on your own. Those are the people I like to surround myself with now. If they stuck around for my worst they are keepers forever.
One of the biggest surprises to me after losing Isaac is that everyone is worried about the mom, but most forget that the Dad lost their child too. I can count on one hand the number of people that reached out to Tom to ask how he was. Most people would text or call him and ask about me. Please, please remember the Dads. They are the ones holding up the moms, making important decisions, like burial outfits and what color casket so the Mom doesn’t have to. They are barely holding on as well, and they need just as much support. Take them out for a beer or coffee. Send them a card. Or even just a text or call to say you’re thinking about them would go so far.
You should also know that grief doesn’t go away. Being two years out from losing Isaac, I still have days where I can’t move past that sinking feeling. How it would be easier some days to just stay in bed and not face the world. The simple thrown around question of “how are you?” is so hard to answer most days so you just say “I’m okay” or “I’m good”, when deep down you want to scream “my baby is still dead and not with me – I’m not okay.” Most people wouldn’t be able to handle that so we just smile and say we’re fine.
I would also want you to know that the members of the “loss mom” community are some of the strongest, most compassionate women that I’ve ever met. We would do anything in our power – literally anything – to make it so another mom doesn’t have to become part of our group. These women are the ones out fighting and making other people aware of infant loss in hopes they won’t have the same thing happen to them.
We don’t constantly bring up our deceased children for attention. We’re afraid our child will one day be forgotten. We bring up our children and show some of the few pictures we have because it’s ALL we have. We don’t have the memories or the smiley pictures. We have a lifetime of love in our hearts and we want to share that with you. Please don’t look at the picture or post and think “she wants attention again” or “she’s already posted that picture so many times before.” We’re literally sharing with you, our friends and families, the only thing(s) we have to share of our children.
If someone you know loses a baby or has a miscarriage run, don’t walk to them. Be there for them. Hold them. Love on them. Let them cry. Let them scream and yell. Let them just sit and not talk. Whatever they need, just be there. Show up. They are living their worst possible nightmare and need all of the support you can give them. If you’re scared you’ll say the wrong thing, just don’t say anything. Bring meals to them. Take their older children out for a few hours of fun. Do their dishes. Just DO something.
And when and if a loss mom gets pregnant again, please whatever you do – do not tell them “at least you got another chance.” We wanted that chance. We wanted our child that died. And being pregnant again is the most terrifying and traumatic thing they can go through after losing a previous child. Let us be anxious. Let us talk to you about every little detail and fear during this pregnancy. And reassure us it’s okay if we call our OB again (for the fifteenth time) just for peace of mind.
This Sunday is Baby and Infant Loss Remembrance Day. I’d like to invite you to join me and light a candle at 7 pm and leave it lit for one hour to help us remember our babies that were taken too soon. If you keep your candle lit for one hour in whatever time zone you’re in, there will be a continuous WAVE OF LIGHT over the entire world on October 15th.
These are the main things I would want people to know. Stick with us. Be there for us. Say our child’s name. Remember our child’s birthday. And, please understand that our grief will last a lifetime.
President Ronald Reagan said it best “When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them.”