A mysterious medical condition is killing toddlers to teens

AUSTIN (KXAN) — On Feb. 5, 2013 Jessica and J. Pieratt welcomed their first child into the world, a healthy baby boy they named Moss. On Moss’ first birthday, he blew out the single candle as best he could, while the Pieratt’s gave out a sigh of relief.

Moss turned 1 and was no longer at risk of Sudden Infant Death Syndrome, also known as SIDS, which affects babies up to 1 year of age. What the Pieratts did not know is there was something else that could threaten their child’s life — a mystery that affects toddlers to teens. “We didn’t think something like this could ever happen at all. Let alone he was almost 15 months at that time,” says Jessica.

Trying to absorb the shock

Moss in Feb. 2014 (Courtesy: Pieratt Family)
Moss in Feb. 2014 (Courtesy: Pieratt Family)

In April 2014, Moss then 14 months, woke up with a slight fever; the Pieratt’s thought it was related to him teething. “I gave him breakfast and he was acting kind of tired, so I thought I’d put him down for his morning nap,” remembers Jessica. When she went back into the room, Moss wasn’t breathing. Jessica screamed for her husband to call 911.

When paramedics arrived, the child still had a faint pulse. Moss was rushed to Dell Children’s Medical Center. J. describes what happened over the next 36 hours, “He was on life support the entire time at the hospital. They did everything that they could and tried as many times to see if they could take him off life support, and we made the decision to do so. They gave us some few last moments with him in the hospital before he passed away.”

The Pieratt’s tried to create a peaceful environment for Moss’ last moments. “At the time, trying to absorb the shock of everything that has transpired and yet still trying to salvage every little bit that you can are the last moments with your child,” says J. They sang Moss’ favorite songs, changed his last diaper and gave him his last bath, all while reflecting back on the happy times with Moss and overwhelmed with grief.

“Once we knew that he wouldn’t survive this, I encouraged him to let go and that we loved him, ” says Jessica of saying goodbye to Moss.

What killed Moss?

More than a year after Moss’ death the Pieratt’s still don’t have any answers. His death was not only unexpected, it is unexplained. Moss’ autopsy shows nothing unusual.

“That left us confused. Why, why did Moss pass away?” asks Jessica. After much research, Jessica’s mother found out it is a medical mystery called Sudden Unexplained Death in Childhood, also known as SUDC. SUDC is defined as the sudden death of a child greater than 1 year of age that remains unexplained after a thorough case investigation. Last year, SUDC affected 387 toddlers and teens nationwide. Between 2008-2012, SUDC claimed 201 children, 14 in Central Texas according to statistics provided to KXAN by the Texas Department of State Health.

SUDC cases are rare and therefore, so is the research. “I think it’s highly important for participation in research. Within the last 1-2 years, the U.S. started a national sudden unexplained death registry in childhood,” says Dr. Arnold Frienrich of Pediatrix Cardiology at Dell Children’s Hospital. Dr. Frienrich is referring to the Sudden Death in the Young Registry. It’s funded in nine states or jurisdictions but not yet in Texas.

Laura Crandall is on the advisory board for the registry and is also the co-founder of another registry called the SUDC Registry and Research Collabrative.

Those Affected by Sudden Unexplained Death in 2013

  • 223 children ages of 1-4 years
  • 28 children ages 5-9 years
  • 29 children ages 10-14 years
  • 107 children ages of 15-19 years

The SUDC Registry is based in New York with researchers from the Mayo Clinic doing genetic analysis on the children who’ve died, including Moss. “The research that has been done over the last seven years has all been done by private donations, mostly by families who’ve been affected, trying to change the future. We have not received government funding from research in this regard to date,” says Crandall.

For Crandall, this fight is a personal one. “I became involved after the loss of my oldest daughter Maria, who died during a nap at the age of 15 months,” says Crandall. Seventeen years later, her daughter death is still unexplained and SUDC remains unpredicatable.

“It is really frustrating. The ER side of me loves figuring out why someone is sick and by definition these are children where that doesn’t happen. We don’t know why they passed — in general, if we don’t know what’s causing the death there is nothing really that we could do to prevent something when we don’t understand what it is,” says Dr. Coburn Allen, who specializes in pediatric emergency medicine at Dell Children’s Hospital.

Welcoming a new child while grieving another

While grieving the loss of their first child, the Pieratt’s were getting ready to welcome their second. “I was four months pregnant when Moss passed away. Those five months of feeling like a parent and feeling like we got kicked out of the parent club. Then Madeline was born and I would say that is the most peace I’ve felt since Moss passed away,” says Jessica.

It’s easy to see Madeline has given new life to the Pieratt’s in more ways than one. “Life now with Madeline is bitter sweet. With everything that we do with Madeline is a happy reminder because we get to use all of Moss’ things. We rock her in the same chair, get to read the same books we read to Moss,” says Jessica.

Madeline is forever connected to the older brother she never met, she has his name. As a symbol of the Pieratt’s undying love, they named the little girl who helped them at their darkest time: Madeline Moss Pieratt.

Finding hope

Last year, the Pieratt’s traveled to New York to meet with other parents impacted by SUDC to share their story. While the deaths are rare, SUDC is getting national attention. Just last year, President Barack Obama signed into law the Sudden Unexpected Death Data Enhancement and Awareness Act, which allows the Centers for Disease Control to improve the consistency of collecting data during death investigations and autopsies in still births, Sudden Infant Death Syndrome and Sudden Unexplained Death in Childhood cases.

The Pieratt’s hope one day to have answers into Moss’ death with the SUDC registry and prevent what happened to their family from happening to yours. The family has setup a foundation for Moss.

Faces of SUDC

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