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‘Wesley Was Here’: Mom Shares Story of Infant Loss

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EAU CLAIRE (WQOW) -- It is a club no one wants to join: one mother shares her story of loss to help other families during infant loss awareness month.

"We didn't think anything was wrong. He was just going to be early, might have to spend some time in the NICU, we'll get through this," Heather Hakes said.

Hakes did not have any issues during her third pregnancy in 2013 until her water broke early leading to an emergency C section. But shortly after giving birth to her son, Wesley James, something was wrong.

"Later on, when everybody was going home, and I was by myself with him, he turned gray," she explained.

Doctors discovered Wesley had neurofibromatosis, a disorder that causes tumors to form on nerve tissue.

"'Is it something he can live with?' He's got a lot of tumors in a lot of places. In his pelvis, in his abdomen, in his spinal cord. It was completely wrapped around his spinal cord," she said. "I didn't hear death. You know, to me, he was coming home. We were going to be there for a week, and he was going to come home."

But doctors could not remove any tumors without running the risk of Wesley dying during surgery. Hakes and her husband ultimately decided they would have to let their son go.

Not wanting him to die in the hospital, the family was able to take Wesley home in his final moments.

"I wrapped him in a blanket, that I told him before I left the hospital that he would be wrapped in that blanket, and he would be buried in it, and he would be wrapped in mommy's arms forever," Hakes said.

Hakes said that seven years ago, she would not have been able to talk about her son's death.

"If I would see a baby, or hear a baby, I would cry and think it's not fair I should be holding my baby, I should be cuddling him and kissing him," she said.

But now, it is a way for her to process her loss.

"The more I talked about it the easier it got," she said.

After Wesley's death, Hakes joined the Share Pregnancy & Infant Loss Support Group through HSHS Healthcare.

Ashley Rawlings is one of the nurses who supported Hakes while she grieved the loss of her son, and helps other families experiencing through the program.

"I feel like everybody has their own way of grieving, and every way is appropriate, it's okay. Some people want to share those things, and some people don't," Rawlings said.

For Hakes, sharing is her way of helping other moms and dads.

"It's a club that no one wants to be in, but they're not alone. There are so many resources out there and talking about it does help me. Now I say his name with a smile, and Wesley was here," she said.

October is Infant Loss Awareness Month, and every year HSHS Sacred Heart holds a Pregnancy and infant loss remembrance walk. Because of COVID-19, the event has been canceled and organizers are planning for next year's walk.

To contact Share Pregnancy and Infant Loss Support of Western Wisconsin, call Spiritual Services at HSHS Sacred Heart Hospital at 715-717-6174.

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Stephanie Rodriguez

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