Raising awareness for HLHS

Stephanie Anderson
Posted 1/26/24

Jenny Garcia is the mother of Izabella “Izzy” Garcia. Izzy was born on September 21, 2017 in Torrington from where she was almost immediately life flighted to Rocky Mountain Children’s Hospital.

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Raising awareness for HLHS


TORRINGTON – Jenny Garcia is the mother of Izabella “Izzy” Garcia. Izzy was born on September 21, 2017 in Torrington from where she was almost immediately life flighted to Rocky Mountain Children’s Hospital. 

Shortly after arriving in Denver, she was diagnosed with Hydroplastic Left Heart Syndrome (HLHS), a congenital heart defect (CHD) found only in newborn babies and is almost always fatal. 

Izzy was also diagnosed with Jacobsen Syndrome, a rare disorder of the 11th chromosome in which deletions in the long arm of the chromosome occur. Jacobsen Syndrome comes with its own set of CHD issues, and the two diagnosis together mean almost no chance of survival.

 HLHS affects approximately one out of every 4,344 babies born according to some data. HLHS develops in utero between six and eight weeks and can be detected as early as 16 weeks with an echocardiogram. 

Some times, the baby is able to survive in utero with the blood oxygen provided by the mother’s placenta and the mother is able to carry the baby to term. However, an HLHS diagnosis is reported to be among the highest CHD causes of miscarriages. According to statistics male newborns, by 67%, are at a higher risk of developing HLHS than female newborns. If caught early enough the expectant mother’s care team can prepare for the high-risk birth appropriately. This doesn’t guarantee the infant’s survival, but it does create a better chance for immediate and knowledgeable care. 

 In a normal heart, the left side’s job is to pump oxygenated blood into the aorta, the large artery carrying blood to the body. 

HLHS affects the blood flow through the heart in newborns. As the baby grows in utero the left side of the heart is underdeveloped and does not form correctly, therefore limiting the flow of the blood supply to the aorta. A newborn born with HLHS can have several forms of CHD which affects other parts of the heart.

 There have been advancements in care and medications. The medication, Prostanoid, E-type 1 prostaglandin or PGE1, is commonly used in HLHS babies prior to what is known as the Norwood procedure, in order to maintain the persistent opening between the two main blood vessels leaving the heart. 

 The Norwood procedure is the building of a new larger aorta. The bottom part of the pulmonary artery (which normally goes from the right ventricle to the lungs) is joined with the aorta. This new, bigger aorta would now go from the right ventricle to the body. According to data the success rate of surgery, known as actuarial survival, there is 63% to 80% at one year of age and 58% to 72% at age five. 

 “My pregnancy was perfectly normal according to my doctor. There was nothing out of the ordinary,” Garcia said “I went in for an appointment and they decided to go ahead with a C-section at thirty-seven weeks. I was a little caught off guard, but not really concerned at first.” 

 What made her question things though, was almost every doctor from the clinic was in the room.

 “That’s when I got a little worried,” Garcia stated, “I really didn’t know there was something wrong until after Izzy was born and she was taken to Rocky Mountain Children’s Hospital. On September 22, we were told of her diagnosis. It was a shock. We decided she would have the Norwood procedure to give her a chance.”

  For baby Izzy, the surgery was not enough. On October 17, Garcia and her family were asked to come to the hospital as soon as possible to say their goodbyes, Izzy was not going to make it. Izzy passed on October 18, 2017. Garcia and her family were devastated to say goodbye to Izzy. She was laid to rest in the Valley View Cemetery in Torrington.

 Over the years, Garcia has shared her story in hopes of honoring Izzy’s story by talking of awareness for HLHS and heart disease. This year Izzy would be turning 7 years old and Garcia has set her sights on bigger things.

 “I want to start a foundation in her honor. It will be called ‘Izzy’s Heart’ and there will be a catchphrase for it, ‘Stop in the name of love for heart disease’. Since I have a broken heart and Izzy had a broken heart it seems fitting,” Garcia said “I’m going to school fulltime, right now, so it’s going to be a few years before I can focus on it fully, and at the moment I don’t know anything about starting a foundation, but I’ve got time to figure it out.”

 Garcia talked about some of the things she’d like to see when Izzy’s Heart starts to come together. The foundation would cover Wyoming, Nebraska and Colorado. She would like hospitals to participate, including Rocky Mountain Children’s Hospital the hospital that provided Izzy’s care. The foundation would provide support and care for families with babies and young survivors born with HLHS and other such congenital heart defects that affect those in the tri-state area.

 “I know I would like the first fundraising event to be formal attire. I don’t want it to be casual in any way, that’s been done,” Garcia explained “It will be catered, with silent and live auctions to raise money. It will be in honor of Izzy. I’m not giving up, it may take some time, but it will happen.”

 Garcia wants to remind the community HLHS awareness day is February 2. Garcia would like to see people wearing red that day to bring HLHS to the forefront and to remember a tiny member of this community was who was born with and passed from HLHS, her daughter Izzy Garcia. 

 Garcia will be asking Trail Elementary, where her son and Izzy’s big brother, Cruz, attends school, to join in raising awareness by inviting the faculty and students to wear red on Wednesday, January 31.

 “There is no school on Friday and February 2 falls on the weekend, so Thursday January 31 is the best day to do it,” Garcia remarked “They’ve done it for me over the years and I appreciate it so much.”

 During the interview Garcia brought out a teddy bear wearing a pink headband and weighing 4.4 pounds, Izzy’s exact weight.

 “It’s kind of ironic because I didn’t want her (Izzy) signature colors to be girly, like pink and purple. I wanted her colors to be neutral, sporty,” Garcia asserted “But as it turned out, her signature color was pink. She wore pink headbands, so that’s why the teddy bear has a pink headband.” 

 Garcia, holding the bear close, talked about the organization that made the bear for her.

 “Molly Bear makes teddy bears for parents suffering infant loss. They create bears weighing what your baby weighed. Their (Molly Bears) goal is to help with the grief of losing your baby,” Garcia shared.

 February is Heart Month and while Garcia’s goal to continue to raise awareness is a genuine call to action, sometimes it’s harder to remember that than others.

 “Just last week I felt discouraged. I was thinking about giving up. That evening I ran into someone who told me not to give up, to keep going. They gave me hope and helped to remind me what I’m doing is important,” Garcia stressed “I hope to see a lot of red next week, heart awareness is crucial.”

 Since Izzy’s passing Garcia has not only been on a mission to raise awareness for HLHS, but also for other grieving parents in our area, no matter how they lost their child. In 2018, she and another mother whose child was killed in 2011 in a drunk driving accident near Henry, Nebraska, created the Facebook group, Peace of my Heart. The group is for any parent in our area who is in need of support in their time of loss with continued support throughout their journey. The group is mostly virtual with opportunities to meet occasionally to share their grief and strength. The group can be found on Facebook under the aforementioned name.

 February is Heart Month; each day of the month has a direct prompt to share something heart related. Bringing awareness to heart related issues is paramount to making continued breakthroughs and finding life-saving treatments.