BENTON – Abbey Riley was just two weeks old the day she stopped breathing and turned blue, her five-pound, 12-ounce infant body falling limp in her grandmother’s arms.

That was the first indication, said Abbey’s mother Tiffany Riley, that something was very wrong with her newborn baby girl.

“I remember feeding her that night, and I could tell she just wasn’t feeling well,” Riley said.

“I had gone to get a shower when suddenly I heard someone banging on the door. When I got out, I saw my mom on the phone with 911 and my daughter lying there limp, turning blue and foaming at the mouth.”

Riley said she remembers thinking, “my daughter is dead.”

Marshall County E-911 dispatchers alerted EMS of the situation, and within minutes, Riley said, paramedics were on scene.

Emergency workers rushed to stabilize Abbey while in route to Marshall County Hospital, where they prepared her for air-transport to Kosair Children’s Hospital in Louisville.

Doctors at Kosair determined that Abbey had upper and lower respiratory obstructions, which required a tracheotomy.

They also learned that she was suffering from Respiratory Syncytial Virus (RSV), a major cause of respiratory illness in young children.

RSV causes infection in the lungs and breathing passages and can often be serious enough to require hospitalization.

While at Kosair, doctors also diagnosed Abbey with what they initially thought to be Down Syndrome, Cornelia Delange Syndrome or Noonan Syndrome, but it was later determined that she suffers from a chromosomal disorder called Trisomy3.

The extremely rare disorder occurs when a portion of the third chromosome appears three times, hence the name, Trisomy, rather than twice in cells of the body.

Many affected infants and children have developmental delays, mental retardation, and characteristic abnormalities of the head and facial (craniofacial) area, resulting in a distinctive facial appearance.

Since those initial findings, Abbey has also been diagnosed with various other conditions such as chronic lung disease, pulmonary stenosis, and atrial septal defect (a hole in her heart), which makes each day a challenge for the now, two year-old, bubbly and vibrant little girl.

“I never saw any of this coming,” Riley sad. “We have three other healthy children, and aside from a few minor concerns about my possibly having gestational diabetes, we thought everything was fine with our baby.”

For the first seven months of Abbey’s life, Riley said she and her family commuted frequently to and from Kosair.

In her two years, Abbey has been transported by EMS to Marshall County Hospital 12 times. On one occasion recalled Riley, “school had just let out and the roadways were jammed.”

“They sent out a police escort from Benton to get the ambulance through traffic. The police actually made people move aside to allow them to get Abbey to the hospital,” said an appreciative Riley.

Through trial and error, she said the family has fallen into a more predictable routine in caring for Abbey’s special needs, albeit, a confined one at best.

“Abbey does not get to leave the house from October to April. She gets sick at the drop of a hat, so we are forced to keep her inside.”

The sickness comes without warning, Riley said. “Abbey can be feeling perfectly fine and the next minute, she just bottoms out.”

To date, Abbey has battled a blood infection, a tracheotomy infection, upper respiratory infections, a staff infection, and pneumonia, to name a few.

To guard against such illness, the Riley’s have amassed a barrage of high-tech medical equipment in their home, everything needed to sustain little Abbey’s life, in case of emergency.

The family says they have even invested in a $4,000 air treatment machine to ensure the air quality in their home is suitable for such fragile lungs.

Of being overwhelmed at the site of all the cords, hoses and electronic gadgetry, Riley said, “The tracheotomy does not bother me, the feeding tube does not bother me, and the ventilator does not bother me.

“What does bother me is not being able to take Abbey to normal places, and have her participate in things with us as a family. You always have the thought in the back of your mind that something is missing.”

Because Abbey must stay connected to her medical monitors nearly 24 hours a day, Riley said she is ultimately confined to a few small areas in the home.

Of all the responsibility involved in caring for Abby’s many needs, Riley said, “It’s what any mother would do for her child. I was scared to death at first, but after a while, you become accustomed to it.”

For now, the family says they are working to get through one day at a time.
Riley is currently enrolled in college, working to complete her licensing requirements as a surgical technician.

A home-health care nurse provides care for Abbey while Riley attends classes. With her husband working out of town on a regular basis, Riley is often left to care for her four children, and put herself through college on her own.

“I stay pretty busy,” she said. “From the time I get home from school and the nurse leaves, I am busy with the kids’ homework, getting dinner, doing housework and working with Abbey. After they get to bed, I take time to get my school work done and then I start all over again the next day.”

Riley said that on weekends, she and the children stay home. “From Friday until Monday, we are pretty much homebound.”

With Abbey’s condition, Riley said it is difficult for family members to step in and help out.

“A lot of my friends and family will take the other children out so they can go do things and not have to stay home. The kids really are great about it though. They never treat Abbey as if she were a burden to them.”

Riley said the kids also are quick to pitch in and help in caring for their baby sister.

“They all fight over who gets to hold her in the morning and who gets to help me in taking care of her basic needs, such as tending to her tracheotomy and her feeding tube” she said.

For now, the Rileys’ hope that Abbey’s condition will begin to stabilize and at some point, they hope to be able to have her tracheotomy removed.

At age three or four, doctors plan to operate and close the hole in her heart.

As for her daughter’s future, Riley said, “There are a lot of things that will be different from other kids for Abbey, but many of those things will not be ‘different’ so to speak, for her.

“For instance, If she never knows how ice-cream feels and tastes in her mouth, then she will never know what it’s like to miss it.”

The family is hopeful that in time, Abbey’s condition will improve to such a degree that her mobility is no longer restricted.

“It’s our dream to take a family vacation, Riley said. But if Abbey does not get any better and cannot go, then we won’t go either. We’ll go as a family or we won’t go at all.”

“Marshall County EMS and Hospital have been such a blessing to our family. They have always been here when we needed them. Had it not been for the ambulance service’s quick response to our first call for help, Abbey might have suffered permanent brain damage. I can’t say enough about how quickly they got here, it seemed like seconds. The longer she went without breathing, the better chance she had at being permanently injured. It’s not just a blessing to us, it’s shocking that we have been able to avoid that with Abbey. EMS even transported her to Louisville once when bad weather prevented an aircraft from being able to come in and land in Marshall County. The hospital staff are great as well. They always ask me how we care for Abbey at home, and they respect my wishes rather than trying to just take over. It is a small facility and they all know me, and that is comforting for me and my family. I can’t thank everyone enough for the care we receive for Abbey. If it were not for Marshall County’s EMS team and hospital staff, our daughter would not be here today.”

Tiffany Riley