BERKELEY – Carly Fetzer came into this world with life stacked against her.
She was born with a very small left coronary ventricle in 2000. That meant there would not be one day, one week, or one year that her life would not be terribly affected by her handicap. The skinny girl’s body could not handle fluid accumulation, which built up in her stomach, legs and feet to the point where she had to have her abdomen drained at least once a month.
Children’s Hospital of Philadelphia became her family’s second home.
Carly’s condition was known as hypoplastic left heart syndrome, a severe congenital heart defect in which the left side of her heart was underdeveloped. Her heart condition also affected her kidneys.
Her first heart surgery came when she was only two days old. She had several others after that. A stroke when she was seven months old during one of the surgeries also left her with some brain damage.
Carly and her parents, Claudine and Bob Fetzer and her twin sister Ryanne, fought as hard as they could to support Carly in her struggle against her physical handicaps and treatments that she endured for all of her 18 years.
“Our only goal is to make Carly as comfortable as possible and to keep her home,” Claudine said in a recent interview with The Berkeley Times. “She hates being in the hospital.”
Now her fight is over. Carly died in the late afternoon of April 26, at CHOP.
And even though her family knew Carly would not have a long life, they are devastated.
“We are completely broken and our hearts are shattered in a million pieces,” Claudine wrote on the family’s Believe 4 Carly Facebook page after her daughter’s death.
The Fetzers never knew when the next emergency would surface. The family’s fear increased back in June 2015, when doctors told them it was unlikely that Carly would survive a heart transplant.
“They found Carly NOT to be a good candidate for a heart transplant,” Claudine wrote then on the family’s Facebook page. “Not what we were expecting to hear and very devastating to us. Options left are not very good and they do not know if anything will help her…I’m so proud to be Carly’s mom. She is a true fighter and continues to make the best of her life and situation no matter what life is throwing at her.”
For the past several years, the family, Berkeley Township schools and residents celebrated “Carly Day” every Feb. 12. That was the day they all wore red “Team Carly” T-shirts to support Carly, anyone living with a congenital heart defect and anyone who lost their battle from heart defects.
Carly passed away on April 26th.(Photo by Patricia A. Miller)
Carly was in CHOP in late January with poor kidney function numbers. She also had to have two wisdom teeth removed. She was back in again in early February due to massive fluid buildup in her abdomen. It was a frightening time for the family.
The fluid buildup made her very short of breath and elevated her heart rate. When they got to CHOP, nurses drained 8.5 liters of fluid from Carly’s abdomen.
Claudine said Carly had not been herself since her January hospitalization. She was agitated and restless and rarely smiled.
Carly was a 2018 graduate of Central Regional High School.
“Her time spent in school was always highlighted by the unwavering support of the students and staff members,” her obituary states. “The outpouring of love from our community has been both humbling and comforting. No words could ever truly express how heartwarming it was to know that we were not on this journey alone, from 2015 to the present.”
Carly’s wake will be held on Wednesday, at Riggs Funeral Home at 130 Route 9 North in Forked River, from 1 p.m. to 3 p.m. and 6 p.m. to 9 p.m. Visitors to the wake are asked to wear their red “Team Carly” T-shirts if they have one, according to her obituary.
Her funeral mass will be held at 11 a.m. on Thursday at St. Barnabas Church, 33 Woodland Road in Bayville. She will be buried at Ocean County Memorial Park in Toms River.
