It’s too late for Hayden, but her mom wants to help others

Error message

Notice: Use of undefined constant view_mode - assumed 'view_mode' in premium_node_view() (line 63 of /data/web/public/drupal/sites/all/modules/premium_content/premium.module).
A brief life — Kayla Riffe takes a selfie with daughter Hayden, who was born with a fatal genetic disorder. Hayden died May 27.

A brief life — Kayla Riffe takes a selfie with daughter Hayden, who was born with a fatal genetic disorder. Hayden died May 27.

PHOTO COURTESY KAYLA RIFFE

LOVING ARMS — Nineteen-year-old Kayla Riffe seized every opportunity to enjoy time with her critically ill daughter. 

LOVING ARMS — Nineteen-year-old Kayla Riffe seized every opportunity to enjoy time with her critically ill daughter. 

PHOTO COURTESY KAYLA RIFFE

Kayla Riffe, a 19-year-old single mom from DeLand, wants to see a change in state legislation that would have made a happier life for her critically ill daughter.

It’s too late to help Kayla and Hayden. Hayden died May 27 at the age of 18 months.

Some parents like Riffe can be trained to meet their children’s complex, round-the-clock medical needs, and a state program will pay them, instead of paying for the services of outside nurses. That way, the parents are able to forgo working outside the home.

But, there’s a catch. The children must be at least 3 years old. Hayden, born with a very rare, fatal genetic disorder, didn’t make it. That’s the rule Riffe wants to see changed — especially, she said, because those outside nurses sometimes can’t be found.

Hayden suffered from a heart defect, chronic fluid in her lungs, near blindness, severe sensory issues and developmental delays. She needed constant respiratory support, her mom said, and her immune system was drastically weakened.

Because of a home-nurse shortage in Volusia County, Riffe said, she searched for a year for caregivers to stay with Hayden four days a week, so she could get a job.

“And the nurses that did come out were not comfortable taking care of my daughter because of the severity,” she wrote The Beacon in the weeks before Hayden’s death, adding, “I have no nursing and I have no options.”

“There are limited agencies providing in-home pediatric nursing care in Volusia County, and it would be particularly challenging to find local pediatric-trained nurses who would provide extended care in the home for a child with these issues,” Lindsay Cashio, a spokeswoman for Florida Hospital Volusia Flagler and Florida Hospital Home Health Care, wrote in an email.

Cashio added, “While I don’t know the specific number of nurses in Volusia County who would fit this criteria, this is a very narrow, niche type of private home care.”

While trying to navigate the system to find help, Riffe knew time was limited.

“My daughter was not supposed to survive past a week,” Riffe wrote in the earlier email. “There is a slim chance she will make it to 3 years old. I feel as though age is a poor qualification to determine eligibility for disability benefits.”

In May, Riffe had to quit yet another job, she said.

“Now, I’m so glad I did, that I got that last three weeks with her,” Riffe told The Beacon May 30. 

In the weeks before Hayden’s death, Riffe said, she was on the verge of losing her home due to lack of income, and faced applying for welfare. 

She was desperate to assure that whatever amount of time Hayden had would be spent as comfortably — physically and spiritually — as possible. 

Florida’s Medicaid Waiver iBudget Program allows parents to be qualified, trained and compensated to care for children with certain disabling conditions, but only if the children are 3 years or older.

Riffe hopes to work for a change in the rule, so others don’t have to go through what she and Hayden did.

“She’s changed my life so much for the better,” Riffe said in a phone interview the week before Hayden’s death. “I know there are so many other parents dealing with situations like this. I’d like to see it changed for all of us.”

The grieving mom still wants that for other children and parents. 

“I know Hayden’s walking, talking and breathing so easily now,” Riffe said May 30. “I can’t wait to see her again. I want, and I know she wants, to make a difference for other people going through something like this.”

Riffe also plans to volunteer with a puppy who comforted Hayden in her final hours. The dog was donated to the family by Alexandra Clark of Command K9 Behavior in DeLeon Springs in the hope that he could serve as Hayden’s service dog. 

“He’s going to be trained as a service dog, and I’m going to take him into hospitals to visit children,” Riffe said. “I know when we were in [the hospital], you’d go days without seeing the outside. It got so sad and depressing, but people would bring service dogs in to visit and it helped so much.”

The young mom donated Hayden’s heart valves in the hopes of saving another child’s life.

Hayden lived longer than she was expected to.

Many infants born with Trisomy 13 die within their first days or weeks of life. Only 5 to 10 percent live past their first year, according to the National Library of Medicine website.

Riffe refused to put her baby in a group home, as was initially suggested by medical staff. She cared for Hayden around the clock, taking her to doctor appointments and enduring regular hospital stays.

Hayden underwent five surgeries, including a tracheostomy, which allowed her to breathe without a ventilator, and the insertion of a gastrostomy, or feeding, tube, also called a G-tube. 

“With doctors that had no expectation for her, I was the one that stayed up countless nights working with her, doing speech therapy, and was able to get the G-tube out at 7 months,” Riffe wrote in an email to The Beacon May 17.   

Months of training taught Riffe to manage the tracheostomy so she could take her daughter home to care for her. At the time of her death, she was one of the oldest living children with Trisomy 13, her mom said.

Now Riffe’s hope is to be a help to others.

“Nothing can heal my heart from this, but I’m going to do everything in my power to be strong like my smart, caring, and beautiful daughter,” Riffe posted on social media on the day of Hayden’s death.

— Erika Webb, erika@beacononlinenews.com 


"Trisomy 13, also called Patau syndrome, is characterized by heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes, extra fingers or toes, and a cleft lip and/or cleft palate as well as weak muscle tone.”

— National Library of Medicine website 

Rate this article: 
Average: 4.7 (12 votes)