TORRINGTON – For the last eight years, Jenny Garcia, of Torrington, has remembered her daughter, Izzy, by bringing awareness to childhood congenital heart disease with her dedication and grief. 

Izzy was born with a rare heart condition, Hypoplastic left heart syndrome (HLHS), on September 21, 2017, in Torrington. She was immediately life-flighted to the Rocky Mountain Children’s Hospital. At a mere 27 days of age, Izzy passed away from complications. It was an event which forever changed Garcia and since the moment Izzy went to Heaven, Garcia has advocated for more awareness among parents. 

“I wanted to share a different aspect of her story this year,” Garcia said as she unboxed a shoebox full of childhood mementos and photographs. “This Molly Bear is 4.4 pounds, the exact weight of Izzy at birth. I got to design the bow and the heart,” Garcia said, pointing to Izzy’s bear. “It was free. All I had to pay for was the shipping. Molly Bears is what it’s called.”

Molly Bears, a nonprofit, is a way to exert a positive and comforting impact for families enduring infant loss of any form by creating a custom-weighed teddy bear. According to their website, they have made nearly 30,000 “Molly Bears” to help grieving families cope with the devastating loss. 

Garcia had received appropriate prenatal care during her pregnancy with Izzy, she recalled, which included basic ultrasounds but no one suspected a thing. 

“I’m advocating for heart month for anyone who has heart disease,” Garcia said. 

According to the October 2024 Center for Disease Control and Prevention Heart Disease Facts, heart disease is the leading cause of death of men, women and people of most radical ethnic groups. Although HLHS isn’t considered a form of heart disease, Garcia feels a calling to educate the public on matters of the heart. 

“I just am really adamant about advocating and sharing our story so that people know that it could happen to you,” Garcia said. “I want people to be aware that you might not know that this is going on when you’re pregnant. Because the technology, I know it was only back in 2017, but the technology back then might have not been as good. I don’t know if they just missed something.” 

Throughout the pregnancy, Garcia explained she felt well and the doctors believed Izzy was a healthy baby girl.

“I don’t know where they missed it, how they missed it. Then the doctor kept saying that she was perfectly healthy. When she was born, she was not breathing. She was two pounds smaller than they thought she’d be,” Garcia said. “Thirty-seven weeks [gestation].”

Garcia’s first pregnancy was difficult, the mother remembered, so she wasn’t prepared when there were no complications with her pregnancy with Izzy.

“What’s really strange is, my pregnancy with my son was really bad. I was in and out of the hospital. I had a lot of problems,” Garcia explained. “With her (Izzy) though, it was kind of weird, it was the opposite. It was a pretty decent pregnancy compared to my son’s. I thought it was strange that he came out perfect health-wise, but she’s like…no. Not even close. She had so many issues.”

The Centers for Disease Control and Prevention explains, HLHS occurs when the left side of the heart doesn’t form correctly during the pregnancy, which affects normal blood flow through the heart. The critical congenital heart defect requires surgery soon after birth. 

“Basically, they go through three different surgeries,” Garcia further explained. “She (Izzy) got through the first one. It was called the Norwood. She went through that kind of successfully, but the first night after surgery, she didn’t do so well. If the doctors wouldn’t have been totally on it, she would have died that night.”

Surgical options for HLHS included cardiac transplantation and the Norwood Producer, Garcia explained. The Norwood Procedure is a series of open-heart surgeries designed to have the unoxygenated blood flow directly to the lungs. The right side of the heart would be used to pump the oxygenated blood to the body. 

KidsHealth explains a new larger aorta is built and a shunt or path is created to allow blood to flow to the lungs. 

“Babies who have the Norwood procedure usually spend 3 to 4 weeks in the hospital to recover. They get around-the-clock care and monitoring. They also get medicines to help the heart and improve blood flow,” KidsHealth said. “They will keep taking some of these medicines at home.”

Izzy’s first night after the stage one surgery of her treatment was touch and go, Garcia recalled. 

“There were a lot of ups and downs that first night,” Garcia said. “Then she (Izzy) got diagnosed with Jacobsen syndrome which is like a piece of your 11th chromosome is missing. Because of her, I was able to find out that I have Jacobsen [Syndrome].”

MedLinePlus further explains Jacobsen syndrome is a condition caused by a loss of genetic material from the 11th chromosome. The site notes signs and symptoms can vary considerably however affected individuals experience a delay in motor and speech skills. The site continues by explaining cognitive impairments, learning difficulties, behavior problems and attention span problems have also been reported in those with the syndrome. 

“Other features of Jacobsen syndrome can include heart defects, such as underdevelopment of the left side of the heart (hypoplastic left heart syndrome); feeding difficulties in infancy; short stature; frequent ear and sinus infections; and skeletal abnormalities,” MedLinePlus explained.

In 1964, United States President Lyndon B. Johnson issued the first proclamation declaring February American Heart Month. The month was dedicated to raising awareness about heart disease and it is still celebrated today, Garcia explained. 

“Every year, we have ‘Wear red day.’ This year, I work at the middle school as a sub teacher, I asked the middle school if we could do ‘wear red’ on Wednesday. So, Wednesday is ‘Wear Red Day’ for Torrington Middle School,” Garcia explained. 

Traditionally, Wear Red Day is celebrated on the first Friday in the month of February.

“This year, it’s this coming Friday (February 7) and it’s a national thing all over the United States. Locally, I’ve been doing this, this will be my seventh year advocating,” Garcia said. “I guess, I just like advocating for everyone, all the kids that go through this. I know there’s quite a few in the community that have had heart things so I am a big advocator of heart things.”

Garcia has used her grief to help others with support groups and she is also in the process of establishing a foundation in Izzy’s name, to help other families who may be facing heart-related medical issues with their children. Garcia has found support herself in her grieving parent’s support groups, “Peace of my heart” and “It could happen to you” on Facebook. She also noted the support she has gathered among friends like Holly Sanchez has been irreplaceable. 

Garcia has found strength and comfort in a poem she found online:

“Why God sent me a HLHS baby:

It’s a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angles says to Jesus, ‘I don’t want to leave, I like it here, and I will miss you.’ He reassures the scared little angel that everything will be okay, and that she is just going to visit.

The tiny angel is still not swayed by this idea. So, Jesus kneels down and says, ‘How about if you leave half of your heart here with me and take the other half with you, will that be okay?’ The angel smiles and says, ‘I guess that will work.’ But the little angel is still a little scared. She asks, ‘Will I be okay with only half of my heart?’ Jesus replies, ‘Of course you will! I have other angels there that will help you, and you will be just fine.’

Then Jesus gives the angel more details about his plan. He says, ‘When you are born your mommy will be scared, so you have to be strong.

When you feel weak, just remember that I have the other half of your heart, and that I love you.

Enjoy your time with your family, play and laugh every day and when it’s time to come back to heaven, I will make your heart whole again.

Always remember that you are not broken, just torn between two loves.’”

“My biggest message to everyone is that it could happen to you,” Garcia said. “I want to make sure that I advocate for the rest of my life for my daughter. I can’t imagine someone going through what I went through. I didn’t know I had Jacobsen’s. I didn’t know anything about heart conditions. When I see people in the community wearing red on ‘Wear Red Day’ my heart just…it’s so happy.”