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50.50: Opinion
I told lawmakers about my stillborn child – and helped pass a key bill
Louisiana has approved a law that will alleviate the emotional and financial burdens for bereaved families. The rest of the US should follow suit
Joni Hess
26 July 2021, 6.59am
Illustration: Inge Snip
I drove an hour and a half to the Louisiana state capitol building in Baton Rouge, on 26 April, to tell legislators about my daughter Eliana.
On the journey, I kept thinking to myself: would I be able to do this? I had rarely spoken about what had happened. Now, I was about to do so before strangers who had the power to vote 'no' on a bill that could help many other women like me.
Eliana weighed 5 pounds, 4 ounces when she was born on 8 February 2019. In my hospital bed, I held her tightly, fighting back tears so they wouldn't cloud my final views of her face. Sometime that morning, she had passed away in utero. We never found out why.
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In the US, stillbirth is defined as a foetal death after 20 weeks of pregnancy. It affects about one in 160 births – meaning that there are about 24,000 stillbirths each year.
The emotional toll of this experience on my family was immense, as it is for many others. The financial toll was as well. Our notorious for-profit healthcare system charges an average of $13,811 per birth. If a baby takes one breath after being born and then passes away, the family can claim life insurance, and a tax credit. But not if they're stillborn.
Only a handful of states provide a tax credit that can help alleviate some of the financial burden after a stillbirth. Louisiana was not one of them. This is why I was travelling to Baton Rouge – to share my story with state legislators in an attempt to change the law.
'It's not about dollars and cents, it's about heart and soul'
Earlier this year, two years after Eliana's death, Kimberly Novod, executive director of the Saul's Light non-profit, had contacted me. Her group, which is based in New Orleans (where I live), supports people after stillbirths or if they have babies in intensive care.
Novod had spent years trying to find a state lawmaker willing to sponsor a bipartisan bill to establish a $2,000 income tax credit for families who have experienced a stillbirth. Finally, she got the support of Republican representative Stephanie Hilferty.
Novod had read a Vox article I'd written about the financial cost of stillbirth and asked if I'd be interested in sharing my story with our state's legislators. Of course, I didn't mind writing about my experience – but I'd never considered speaking about it at this level.
This was how I found myself with other women in Baton Rouge in April, ready to share our testimonies of loss and healing before a committee that oversees state finances.
The entire process – parking, navigating the busy capitol building, asking suited strangers for the right room – was intimidating. Important matters were being voted on by the committee of 16 men and three women. Representatives spoke for hours about where money should be allocated. We were grieving mothers. Would they actually listen to us?
It was too important not to try. We had to show these legislators why tax credits are needed for bereaved families. And we were astonished by their positive responses. Committee chairman Stuart Bishop's powerful conclusion was that "something of this magnitude […] it's not about dollars and cents, it's about heart and soul."
HB146 was approved by the committee without a single objection. From there, it went to the state senate and then to Louisiana governor John Bel Edwards, who signed it into law on 29 June, just two months after we had gathered the courage to give our testimonies.
The rest of the US should follow suit. When this tax credit takes effect in 2022, families will be able to use it to offset funeral costs, mental health services and medical bills. But I think most would agree the biggest need it fulfils is the recognition that their child existed. Many women grieve in silence after stillbirth and they need affirmation, as well as support.
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