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Shannon Gilkerson (right) said her daughter Avery (center) helps her and her husband Tommy (left) deal with the pain of losing two children.

Benefit to support family after loss

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health New Richmond, 54017
New Richmond Wisconsin 127 South Knowles Avenue 54017

Shannon Gilkerson said her 2-year-old daughter Avery is a "rainbow baby," the blessing who helps Gilkerson and her husband Tommy get through the pain of losing two infant children.

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"If we didn't have Avery, I don't know how we would get through," Shannon Gilkerson said.

Avery, the Gilkersons' oldest child, was born in 2010. Shannon Gilkerson said her pregnancy with Avery went normally, but when she became pregnant again in 2011, things didn't go so well.

"I had the intuition that something was wrong from the beginning," Shannon Gilkerson said. She said she felt she was gaining size faster than she should be.

At her mid-pregnancy ultrasound at 18 weeks, her doctors told her the baby, a boy, had too much liquid in his body and advised the Gilkersons to see a specialist.

The specialist told the Gilkersons their unborn baby boy had fetal hydrops, a condition which causes excess fluid in the body. The specialist was also able to determine that Shannon Gilkerson had placental previa, which meant the placenta was attached right over the cervix. This meant a caesarian section would be necessary.

The specialist told the Gilkersons the fetal hydrops could be treated if they could discover the cause and the baby's best chance to live was to keep him in utero as long as possible.

Shannon Gilkerson went into labor at 28 weeks and was taken by ambulance to the hospital where she had an emergency C-Section.

The baby, Cash William Gilkerson, lived for eight hours, while doctors were working to save his life.

"They came up and said that we had to come down and say our goodbyes," Shannon Gilkerson said. "By the time we got down there, he had already passed away."

Shannon Gilkerson said she never even got to hold Cash.

"Leaving the hospital was probably the worst moment in the world," Shannon Gilkerson said, "... leaving without a baby."

Shannon Gilkerson's doctors told the couple it was safe to try for another baby. Shannon Gilkerson found out she was pregnant again in August of 2012. Once again, everything seemed normal until the mid-pregnancy ultrasound. The ultrasound technician assured the Gilkersons there was no sign of fetal hydrops or placental previa.

Shannon Gilkerson said she was more concerned with finding out the baby's gender, until the doctor came in the room and said he had bad news.

"I looked at him in shock," Shannon Gilkerson said. "I thought he was joking."

The doctor told the Gilkersons their baby had polycystic kidneys. This meant her kidneys were not functioning properly, so she did not have enough fluid in her body to properly develop her lungs.

The Gilkersons learned their unborn child, a girl they named Hadley Ray, had Autosomal Recessive Polycystic Kidney Disease (ARPKD), a genetic disorder linked to a mutated gene that results in non-functioning kidneys with micro cysts all over them. She also had a zero percent chance of survival.

Shannon Gilkerson said ARPKD can, on rare occasions, cause fetal hydrops and while she has no way of knowing for sure, she thinks the disease may have played a role in Cash's death.

Shannon Gilkerson said ARPKD caused Hadley's kidneys to become so enlarged by the time she was born that they took up her whole abdomen, leaving little room for other organs.

Hadley was born at 24 weeks on Jan. 10 and weighed one pound and four ounces. She lived for four hours.

"For me, it was a more peaceful situation," Shannon Gilkerson said. "I was able to hold her the whole time...everything I wish I could've done with Cash, I was able to do with Hadley."

She said one of the things she was able to do with Hadley was allow Avery to meet her new sibling.

"Her meeting Hadley was amazing," Shannon Gilkerson said. "Her happiness during that time made it just seem not so bad."

Hadley and Cash are buried in the Gilkersons' plot in St. Anne's Cemetery in Somerset.

Shannon Gilkerson said people don't realize that, while the Gilkersons didn't get to take their babies home from the hospital, they did still have to deal with the aftermath of having a child, including hospital bills and, in their case, funeral expenses.

Several of the Gilkersons' friends have come together to plan a benefit for the family, to help them with their bills.

Ashley Jansen, one of those coordinating the benefit, said she has known the Gilkersons for years.

"They're just extremely deserving of this," Jansen said. "They're completely humbled by it."

The benefit, which will include a chili feed, wine raffle and meat raffle, is scheduled for 1 p.m. Saturday, Feb. 23, at Champs Sports Bar and Grill in New Richmond.

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