from the very thing I had been teaching others about.”
October is known for being Breast Cancer Awareness Month. And Domestic Violence Awareness Month.
It is also SIDS, Pregnancy and Infant Loss Awareness Month.
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Dear Amber,
I appreciated your letter and was saddened to learn of the loss of your daughter. Few things can heal the ache a loved one leaves behind …
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“There are other misconceptions,” Ken Terhune said. “Like, that you’ll get over it. We’ve gone through a lot of grief classes and things like that. We know that everyone grieves at different rates. Men and women handle the grief differently. People think, it’s been six years now, you should be OK.
“But it doesn’t go away. People told us to give ourselves some time. But maybe that’s not the right answer. It’s over when it is over, or maybe it’s never over. The loss doesn’t just go away.”
Amber echoed her husband’s thoughts.
“We began to question our own parenting skills and ability to keep our surviving children alive,” she said. “Sleep felt like a threat. We’d wake up several times a night to make sure our other children were breathing. A simple cold brought a level of fear I never knew existed. We feared letting them out of our sight.”
She said friends and family tried to help, but didn’t always know what to say.
“People try so hard to say helpful things and the thing is there is nothing you can really say to make it better,” she said. “There were people that told us we can have more children, or that God needed another angel. At the funeral, someone said, ‘OK, the funeral is over, now it’s time to move on with your life.’
“Another said to focus on your living children. Of course we do, but that doesn’t mean her life didn’t matter either.
“I basically tell people that whatever you are feeling right now, it is OK. If you are breathing, and all you can do is focus on that next breath to get through the day, then that is OK. More than anything, just reach out and be ready to listen. Or just be there.”
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Dear Amber,
I appreciated your letter and was saddened to learn of the loss of your daughter. Few things can heal the ache a loved one leaves behind, but I hope you find some comfort in knowing your efforts may help spare others the pain you have had to bear …
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After the Back-to-Sleep Campaign launched in 1994, studies revealed a more-than 55-percent decline in SIDS related deaths through a 17-year period between 1991 and 2008.
The numbers were impressive, but the they did not account for a substantial shift in how states across the country classify SIDS.
Michigan, Maryland, New Mexico, Georgia and Florida, for example, all list deaths in more specific categories with preventable causes, including when unsafe sleep conditions may have played a role. Many other states have followed suit.
In North Carolina, numbers have dropped from 53 percent of infant deaths being attributed to SIDS in 2008 to less than five percent. The Charlotte Observer reported in 2010 that hundreds of infant deaths were wrongly attributed to SIDS in the state every year prior to the shift.
“That’s another misconception is that the numbers dropped because of the Back-to-Sleep campaign,” Amber said. “A lot of states just don’t classify it anymore. So really, the numbers haven’t dropped, they have just moved into other categories.”
When investigators came to the Terhune’s home, they said the last case classified as SIDS in Nevada had been in 1995.
Still, SIDS remains the leading cause of death in infants one month to one year of age. It’s estimated that between 7,000 and 10,000 deaths each year may be attributed to SIDS.
“Right now, we are just trying to stir a grass roots effort locally,” she said. “There are grief support groups, but nothing specifically for parents who have lost a child with no explainable reason. There is no SIDS foundation chapter here.
“This is something that happens and there is not really a support network to help people deal with what they are experiencing.
“We’re starting with little things here and there. There is a memory walk in Reno. One of the biggest things is we get overshadowed by the Breast Cancer and Domestic Violence awareness month. It’s one of those things, no one really wants to talk about babies dying and especially that it is not preventable.
“I and a couple other SIDS moms started talking about maybe trying to get the awareness month changed.”
Amber contacted Douglas County Commissioner Lee Bonner about trying to raise awareness in Douglas County.
“He suggested a proclamation,” she said.
The Terhune family attended the Douglas County Commission meeting on Oct. 2 and Amber read a prepared statement before the family was presented with a proclamation.
Nevada Governor Brian Sandoval also signed a proclamation in September recognizing the awareness month.
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Dear Amber,
I appreciated your letter and was saddened to learn of the loss of your daughter. Few things can heal the ache a loved one leaves behind, but I hope you find some comfort in knowing your efforts may help spare others the pain you have had to bear. In your resolve, we see the fortitude of the American spirit …
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In aftermath of the family’s loss, Amber began to consume herself with researching SIDS.
“I found other SIDS parents, and sadly a whole lot of them,” she said.
She organized a trip across the country to Florida, where she’d stop at the homes of other families who’d been through similar loss.
“We talked with these families going through the same crises,” Ken said. “It’s comforting and disturbing at the same time. Just seeing how widespread it is, how devastating it can be.”