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.”
Amber said she also talked with doctors, nurses, researchers, medical examiners, paramedics, investigators, police and just about anyone who would listen to her experience.
“SIDS has no symptoms or warning signs,” she said. “Babies who die of SIDS seem healthy before being put to bed. They show no signs of struggle and are often found in the same position as when they were placed in bed.
“SIDS is not caused by external suffocation. It is not caused by vomiting and choking. It is not contagious. It does not cause pain and suffering in the infant. It cannot be predicted and it is not child abuse or neglect.”
The Terhune’s fifth child, Zion – now 5 years old – was born on what would have been Arianna’s first birthday, also eight weeks early.
“They both came home on the same day of the year, they had identical circumstances,” Amber said.
“So much of this has been about trying to help our older kids with their grief too. They were there when we found her, they saw us performing CPR on her. They have grieved in a totally different way.”
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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. Stories like yours motivate my Administration as we continue to support medical research and strive to improve the lives of all those touched by illness …
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“There are only a couple doctors who study specifically in SIDS,” Amber said, noting Dr. Hannah Kinney. “What they have come to that seems to make the most sense is that there is a brain stem abnormality. For some reason their Serotonin level will just drop and when that happens, it is instant brain death.
“A lot of times, if the baby has been accidentally smothered or suffocated, they can get their heart beating again. With a SIDS baby, there is nothing you can do.”
In efforting a change in awareness months, Terhune said she hopes more funds can be raised to aid in SIDS research.
“Breast Cancer and Domestic Violence are great platforms. But we just kind of get overshadowed,” she said.
“So many funds go to those efforts, but there is so little funding for SIDS research. It’s unbelievable how little funding there is.
“It’s the No. 1 reason babies die. You’d hope we could find a way to make more of an effort to save the babies.”
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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. Stories like yours motivate my Administration as we continue to support medical research and strive to improve the lives of all those touched by illness. I trust you take pride in the work you are doing, and I wish you all the best. Sincerely,
Barack Obama
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Amber struggles to identify how to increase national awareness.
“I’d love to see more resources locally for parents going through this,” she said. “My husband and I have talked about going through more training to conduct grief classes for parents. That would be my main focus.
“But moving forward, I’d would love to see an increase in research funds, in more awareness being made. But even just somehow getting word out on a national or global level.
“I understand it’s a hard thing to make a change like that but …”
Just then there was a knock on the family’s front door.
It was a neighbor, saying she’d mistakenly been delivered some of the Terhune’s mail. Ken took the manilla envelope into the kitchen, opened it, and remained silent for a few moments.
He returned to the living room, and handed the letter to Amber.
It was from the President of the United States.
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For more information on SIDS and research into the syndrome, visit www.firstcandle.org. SIDS, Pregnancy and Infant Loss Awareness Day is Wednesday, Oct. 15.