TORRINGTON – Izabella Marsden-Garcia was, as her mother Jenn Marsden-Garcia put it, a diva.
Nurses in the pediatric intensive care unit (PICU) at Rocky Mountain Hospital for Children in Denver told Marsden-Garcia she would wiggle around as they tried to give her medications. Her eyes were closed most of her short life due to the medication, but there are photos capturing her big brown eyes staring into the camera.
Izabella was born with hypoplastic left heart syndrome, a birth defect that affects normal blood flow through the heart, that resulted from Jacobsen syndrome, a rare genetic disorder that afflicts roughly one in 100,000 newborns, according to the National Library of Medicine. Izabella is part of the 5% of children with Jacobsen syndrome who also develop hypoplastic left heart syndrome.
She died just 27 days after she was born. The story of her short life fits into a pastel-colored scrapbook, with photos of her and her family, a pink bow resting atop her head once the tubes and wires were removed from her slight frame.
Prior to Izabella’s birth on Sept. 21, 2017, Marsden-Garcia had never heard the words “hypoplastic left heart syndrome” or “Jacobsen syndrome” before. Now, she’s a near expert with an agenda: to be an advocate so this doesn’t happen to anyone else.
Marsden-Garcia didn’t know to ask about her unborn baby’s heart during ultrasound appointments. The disease could be diagnosed during pregnancy, according to the Centers for Disease Control (CDC), or shortly after birth, which was the case for Izabella. Marsden-Garcia wonders what the outcome could have been if they had received her diagnosis sooner.
“I didn’t really think about it when I was pregnant, because [doctors] said she was good,” she said. “I wish I would have thought of something like that, I just hoped for a decent pregnancy.”
Marsden-Garcia is a carrier for Jacobsen syndrome, but her son, Cruz, 7, tested negative for the gene.
In June 2018, Marsden-Garcia started a bereaved parents group, Peace of My Heart, that has roughly 40 members within the Wyobraska area. The pandemic has put a pause on in-person meetings, but Marsden-Garcia said the group still keeps in touch on social media.
The group is valuable to Marsden-Garcia, as it provides companionship with people who have shared experiences, who understand what it’s like to lose a child.
“At first, it was comforting to know that I could tell my story and I could have people there that would check on me because the first year is pretty hard,” she said. “I’m in year three, and I have physical pain, I get physically ill. It’s just something you can’t explain.”
She encourages parents grieving the loss of a child to reach out to her for support.
To raise awareness for heart disease, Marsden-Garcia is asking community members to wear red on Friday, Feb. 5, in support of National Wear Red Day.
Goshen County School District No. 1, where Marsden-Garcia works and her son, Cruz, is in second grade, sent flyers home to students and parents alerting them of Wear Red Day next Friday.
Marsden-Garcia asks that anyone who wears red to support heart disease awareness take a photo and tag her on Facebook or email her at wyominggirl1979@gmail.com. Those interested in donating to the cause can contribute to the American Heart Association or the Rocky Mountain Children’s Health Foundation.
