BERKELEY – Claudine and Bob Fetzer knew even before their fraternal twin daughters were born that one of them would not be able to live a normal life. They knew that her life would be short and fraught with illness and hospitalizations.
They found that out when Claudine was only five months pregnant. An ultrasound determined that baby Carly’s left coronary ventricle was much smaller than her right ventricle. It would never grow properly.
The twins, Carly and her sister Ryanne, were born in May 2000. Carly had her first open heart surgery when she was just two days old. She has had several heart operations since then.
“Stroke is always a potential risk during her open heart surgeries and that happened during her second open heart surgery, when she was 7 months old,” said Claudine, a former speech pathologist.
Carly’s condition is known as hypoplastic left heart syndrome, a severe congenital heart defect in which the left side of the heart is underdeveloped. The stroke also left her with some brain damage.
“She doesn’t know how sick she is,” her mother said. “She’s kind of like a five-year-old.”
Carly, who is now 18, is living on borrowed time.
“It’s very iffy, if her body can continue for the next five years, ” Claudine said. “Our only goal is to make Carly as comfortable as possible and to keep her home. She hates being in the hospital.”
Carly does not like being alone. She sleeps with her parents at home. They sleep with her in her hospital room.
“She can’t be left alone,” her mother said.
Unfortunately, doctors told Bob and Claudine back in June 2015 that Carly would probably not 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. It’s too much to get into and I’m really not up to discussing it. 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.”
And at least once a month, the family travels to Children’s Hospital of Philadelphia, where Carly must have her abdomen drained of the fluid that makes it difficult for her to breathe and raises her heart rate. The fluid buildup is a result of her heart disease and problems with her lymphatic system. At times, her legs and feet also swell.
Her abdomen gradually swells so much in between drains that people have actually asked family members when the baby is due, Claudine said.
“People say ‘Congratulations,’” her mother said.
And the drains are needed more frequently. They must be done at CHOP. It takes about an hour for each drain procedure.
The Fetzers never know when the next emergency will surface. 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.
“Went to CHOP early Monday morning and they drained 8.5 L of fluid off of her,” her mother wrote on the family’s Facebook page “Believe 4 Carly,” about her daughter. “That’s like a little more than (4) 2 Liter bottles of soda, if u want to look at it that way. And she was just drained 2 weeks prior. This poor girl! But she battles on…”
This time Claudine and Bob came home with oxygen and a wheelchair for Carly, just in case.
The family has a lot of support from the Berkeley community, local area businesses and sports teams. Mayor Carmen F. Amato Jr. and the Township Council recently approved a resolution that declares Feb. 12 as “Carly Fetzer Day.” But family and friends have been informally celebrating the day for the past five years.
“I just want to thank Mayor Carmen Amato and Berkeley Twp for the tremendous support we have always received from Day 1 in 2015 when things really began to decline for Carly,” Claudine wrote on the Facebook page.
So on Feb. 12, Carly’s family, friends and supporters plan to wear their red “Team Carly” T shirts and celebrate her life.
Claudine still has some extra shirts in most sizes. The cost is $15 per shirt.
“All proceeds will go towards the purchase of food vouchers for cardiac families whose child is an inpatient at Children’s Hospital of Philadelphia,” she said.
Do Bob and Claudine get angry because their daughter is so sick? The answer is yes. But they prefer not to dwell on it and instead focus on whether Carly is comfortable.
“But I can see the toll that this is taking on her body…fatigue, weight loss, paleness, etc. and despite all that her smile, sense of humor and her true love for everyone shines through,” Claudine says. “That’s my girl. It hasn’t been easy, but we’ve managed.”
People looking to purchase shirts or learn more can visit facebook.com/believe4carly/.