The longest year: Family waits, worries over baby's fate

An improbable smile spreads across baby Emma Kissock’s face, and it’s enough to melt the coldest heart. Nearly a year old, Emma has plenty of reasons not to smile, but despite it all, she remains an insufferably happy baby.

“She doesn’t have a care in the world,” said mom Robin Kissock, a 1994 CHS grad. “She’s so happy-go-lucky.”

In her first 11-1/2 months of life, Emma has already spent 84 days in the hospital, her little body battling more medical issues than most people will ever face in a lifetime. And to date, doctors don’t have a clear idea of what could be causing all of Emma’s problems or how it could be resolved.

St. John’s Lutheran Church in downtown Chaska, which the Bloomington-based Kissock family is a member of, is holding a benefit for Emma on Sunday, April 6 to help defray some of the continued costs of Emma’s medical care.

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It all started last September when Emma was just five months old. Though she was born premature by more than a month, Emma’s development to that point had been delayed, but was not a concern to doctors, Robin said.

“She wasn’t rolling over, she never held a bottle,” Robin explained. “She had fine motor skills but not gross motor skills.”

After showing symptoms of a cold, along with general malaise and fussiness in September, doctors recommended that Robin take Emma to the emergency room.

“They took an X-ray and thought they saw the beginnings of pneumonia,” said Robin. Because she was having a hard time breathing, Emma was admitted for observation. She stayed in the hospital that time for 12 days.

“They did some tests and got a geneticist involved,” Robin recalled. Few answers were offered the Kissock family though.

“It was difficult not knowing what to think,” said Robin. “We thought she was normal.”

Doctors were able to determine that the baby was prone to stop breathing and diagnosed her with apnea. She was sent home with a monitor and the family learned infant CPR - just in case.

In October, Emma was back in the hospital for a week with bronchitis and a urinary tract infection. November brought about another 13 days in the hospital with urinary tract infection. That stay also revealed that Emma had reflux and a dislocated hip which doctors believe Emma may have had since she was born.

“That’s probably why she never rolled over,” explained Robin.

In December, Emma spent more than half the month in the hospital for bladder surgery. Doctors discovered that reflux into her kidneys was causing repeat urinary tract infections. She suffered renal failure and eight episodes of stopped breathing requiring resuscitation. She also had tubes inserted into her ears to drain fluid. The family spent Christmas in the hospital with a meal made by family members and a fiber-optic tree.

It was hardly the Christmas she and her husband John had envisioned for Emma, Robin said.

In January, while hospitalized again for a fever and infection, the geneticist working on Emma’s case told John and Robin that she was unsure what Emma’s condition is, but added that whatever it is, it must be very rare. She began circulating photos and descriptions of Emma’s case to her colleagues around the country in the hopes that someone might have an idea of what it could be.

February, Emma underwent surgery for her hip. Following the surgery, she was placed in a cast from her ankles to her chest and was outfitted with a special car seat and chair. She was home for only three days before she returned to the hospital with a respiratory infection. Doctors determined that feedings by mouth were causing Emma to aspirate formula into her lungs and started her on a feeding tube.

A tube, a brace and a smile

Today, Emma sports a feeding tube in her stomach, a brace for her hips and an infectious grin, even though the Kissock family is still waiting for answers as to what is wrong with their little girl.

“It’s still frustrating that we don’t know,” said Robin. “I guess we’ll just deal with it. We don’t have options but it would be nice to know what we’re dealing with.”

Robin, who has now cut down her employment from full time to just one day a week, said the hardest part is not knowing what to expect.

“There are so many things going on, so many abnormalities,” she said. “It’s all hard, but we know she’s strong.”

For the Kissock family, faith has played a huge part in getting through the last year.

“We’ve always had the outlook that it’s not our choice,” she said. “We firmly believe everything happens for a reason though we don’t always know why.

“God’s in charge,” she added.

Now as they wait for answers, the Kissock family can only look tentatively toward the future. But Emma’s sister Michelle, 11, of Shakopee, has big plans for her younger sibling.

“(I want to teach her) how to annoy her father,” she said excitedly. “And all the Hannah Montana songs.”

As for Robin, she and her husband are wishing for far less.

“I only hope we can get past everything so she can be a healthy little girl,” she said.

Until then, they’ll take it one day at a time and celebrate the small things.

“To hear her laughing and talking makes all the difference in the world,” Robin said.

-Mollee Francisco, staff writer

Emma Kissock benefit

What: Spaghetti dinner and silent auction

When: 11 a.m. – 2 p.m., Sunday, April 6

Where: St. John’s Lutheran Church, 300 Fourth St. E.

Tickets: $5 per person or $15 per family

More info: stjohns-chaska.info/emma/