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Dealing With The Pain

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Mother Still Copes With Loss Of Child With Anencephaly

By Joel Stevens, Associate Editor

As far as Renee Coffey is concerned, she will always have eight children.

Renee and husband Charles lost their daughter Amanda Grace a little over six year ago to complications from anencephaly, a neural tube defect that prevented their daughter’s skull and brain from developing properly.

Amanda Grace Coffey was delivered by cesarean at Creighton University Medical Center on April 23, 2004. She lived just over 27 hours and died surrounded by her mother, father and seven brothers and sisters.

“I don’t always explain I have one child in heaven, but when people ask ages it depends on if they do the math and figure out I have one more I didn’t mention,” said Coffey, who has seven living children, ranging in age from 8 to 31. “And many times I will mention Amanda. Because I carried her and she is still my baby. I just say that Amanda is 6 in heaven.”

When Amanda passed away, there was a memorial service and a celebration of life with family and friends. Every year around her birthday the Coffeys visit Amanda’s grave. Sometime they leave flowers, other times balloons. Renee has not yet been able to bring herself to buy a gravestone.

“I haven’t been able to do it. It’s the one last thing I have to do for her. I just haven’t been able to do it. I still struggle,” she said.

“If I had a choice of never going through this and not having her or going through things they way I did and having that little baby, I’d choose to go through it all again. Even though it was very difficult and very painful, I believe I’ll see her again in heaven.”

Renee and Charles had never heard of the rare birth defect before Amanda’s diagnosis. Doctors first discovered abnormalities in Renee’s 19-week ultrasound. They were devastated by the news.

“They told us we had to decide whether we were going to carry to term or if we were going to terminate (the pregnancy),” she said. “I went into shock. I couldn’t think. It was a very difficult time.”

There was no debate if Renee would carry Amanda Grace to term. Renee’s a stay-at-home Mom who teaches piano and home educates her four school-aged children. She’s also a strong believer in faith and family and a staunch pro-life advocate.

“I have a strong faith in the Lord and I believe the Lord gave her life and it should be Him who takes her life,” she said. “I didn’t feel like the decision was mine.”

Melissa and Tim Lorang faced the same decision when they were told during a March 15 ultrasound that their unborn daughter was suffering from anencephaly. They too decided to carry their child, Amelia Grace, to term despite doctors’ grim prognosis.

Renee said while doctors supported their decision six years ago, it was never an easy process for her or Charles. The diagnosis, the heartache, inevitable fate of their daughter; it admittedly wore them both down.

“I felt like my life had been sucked out of me,” Renee said. “I don’t think there’s worse pain than losing a child. It was a very bittersweet, difficult journey. But when she was born we had so many pictures taken. We were lucky, we had 27 hours with her.”

Renee reached out to Melissa and Tim through their mutual physician, Dr. Michael Barsoom, Director of Maternal-Fetal Medicine of Alegent Health Bergan Mercy Medical Center. Renee connected Melissa with “Anencephaly Blessings From Above,” a support group for Christian moms that carry anencephalic babies to full-term. The group and Renee’s close family helped her cope with her loss of Amanda and she thought they could do the same for Melissa.

“If I had not had my other children, I don’t know if I could have made it through,” said Renee. “I know that I would have, but it was a such a comfort. To hold them and have them close was a big help. And I think that will be a big help for Melissa too, to have little (2-year-old son) Noah there will really help her.”

Amanda Grace Coffey would have been 6 years old April 23.

“It’s still hard,” Renee said. “I’ve talked to women who have lost a baby 30 years ago and they still have tears in their eyes. I don’t think you ever get over the pain, but I do think you get better at dealing with it.”