Something You Probably Don't Know...

I had a doctor make a promise to me in January of 2018. A promise that now, looking back, I should have known she couldn't keep if it came down to it.

Today I got a phone call and a voicemail while out shopping with my kids. We had planned a fun day out and had just gotten started. I clicked the little voicemail icon as the kids tugged on my legs.

"Hello, this is your insurance company. We are calling to tell you that a decision has been made on your final appeal. The decision...the decision has been upheld."

My heart sank. I sat down on a small bench listening to the entire message as tears began to form. I spoke softly to Mira and Edward, Hey guys, could you sit down next to me for just a moment, please? I need to take a minute. They didn't notice the tears, but they did manage to sit still while I took a deep breath.

In January of 2018, our world stopped when we learned that we would lose yet another child to a fatal prenatal diagnosis.

Mere minutes after receiving the news, we were asked to start making decisions.

Minutes.

"You need an amnio because we need to begin genetic testing right away."

I resisted. I knew insurance companies didn't cover that type of testing. And besides, we had already done these very tests when Sam was born. None of which had given us any answers.

"Things have changed since your first son died. You NEED these tests. You NEED these answers. I will fight for you. And I will make sure your insurance company pays for them. I will fight for you every single step of the way. You are not alone."

With this reassurance, we agreed to the testing.

An amnio was done. The labs were ordered. January. 2018.

Gabriel was born and died on April 15th, 2018.

One week after his death, we received a bill from the genetics lab for payment in full. The insurance company had denied our claim. I called my doctor's office. They faxed over the entirety of our medical records to the insurance company to help with an appeal. And then informed me that because I was no longer pregnant, I was no longer their patient, and I would no longer be helped. 

Over the last 20 months, I have been fighting a battle I was promised by my physician that I would never have to fight alone. Multiple other individuals have stepped in and worked with me at my insurance company as well as a genetics counselor who received our case after Gabriel's death. We put together a solid case as to why this testing was essential and sent it off to the insurance company last month for our final appeal.

There are many things I've never written about, many details I tend to leave out. I don't want people to think I want pity, because I certainly don't. What I do need, is for those who read my words to understand that stories aren't usually straightforward, simple, or over once the funeral is done.

In many ways, it's only just begun. When you're focused solely on the life of your baby, trying to prepare your living children for the death of a sibling, working on grieving in a healthy way...you don't think about the financial aspect of things. None of it matters at that moment.

When the baby dies and you come home...the bills start coming.

And coming. And coming.

And the insurance gets denied.

Again. And again.

There is no life insurance for a baby who dies under 3 days old. Did you know that? I would never have known that if two of my children hadn't died at less than 2 hours old.

When Sam died, my health insurance rates, deductible, and max out of pocket doubled. Because he had a birth certificate, I had to pay family coverage for that year. The company I worked for put money into my HSA to offset the cost of the deductible, and with a family plan they were to double their contribution.

Do you know what happened? They prorated his life.

Prorated. His. Life.

I received an extra $20 towards his medical expenses because that was the daily rate. He was considered alive for one day.

I say all of these things, and then I feel so petty for even worrying about finances. Half of my kids are gone. Half of them are here. I hold tightly onto Mira and Edward, soaking them in as much as I can, grateful that I get to watch them live and breathe and laugh and love. I feel ridiculous for even worrying about these bills or insurance company denials. Who cares?

It's not ridiculous, though. No matter what I've been through, I still have a budget and bills still need to be paid. It's not petty, it just...is. Every few months when I've opened that mailbox and seen Gabriel's name on these denial letters, it's been painful. Every few months when I have to make phone calls, pay for medical records, and write my own letters, it's been exhausting.

And I need you to know because I'm not alone. We aren't the only family who deals with this. We aren't the only people who don't talk about these details. We are one of the thousands of child loss families who deal with these aftershocks.

We will be fine. We know we will be. We spent over a year paying off Sam's medical bills, so this hasn't been a particularly new fight for us.

But I'm sad that a day out with my kiddos was overshadowed by paperwork. By denial.

And by a broken promise that should have never been made in the first place.









Photo by Kate Macate on Unsplash