Things That Matter

7-Month-Old Liam Suffers From a Heart Defect That Went Undetected for Months by Doctors

Miami-based Matthew and Stacey Sirolli never thought that their newborn baby Liam’s health could be put in danger, especially considering doctors detected nothing wrong for months.

As mother Stacey Sirolli explained to mitú, Liam’s story is “complex,” and should serve as a warning to parents everywhere. Doctors did not detect anything wrong with Liam’s heart while he was still in the womb, or when he was born. “Usually with anatomy ultrasounds they would tell you if they see something or when the baby is born,” but “nothing was ever detected until his aunt [who is a nurse] came over one night.”

Liam’s aunt checked him one day with a stethoscope when he was five months old, and told Stacey he had a heart murmur.

Following the news, Stacey took Liam to his then-pediatrician, who said the baby was fine. Stacey insisted they check again, and the pediatrician said “maybe” Liam had a slight murmur, but that she should “not worry about it,” and that it should resolve itself by six months old.

Still, they gave Stacey a referral to take Liam to a cardiologist.

The cardiologist luckily had a cancellation, and Liam’s parents were able to take him in a few days later. Stacey explained, “I knew something was wrong” because the doctors said “fascinating” and they kept requesting more imaging.

Once the doctors caught wind of what was happening, they told Stacey that Liam had to be rushed to the cardiac ICU and that they were already waiting for him. They told her he had just one week left before he went into heart failure. “Nobody noticed other than his aunt, by a blessing.”

Photo courtesy of Stacey Sirolli

As soon as they arrived at the ICU, they explained Liam needed an emergency open heart ALCAPA reimplantation surgery, which he quickly underwent.

The surgery was successful, but doctors continue to monitor Liam’s heart — and “the biggest struggle” right now is to get him to gain weight before his second surgery. Now seven months old, Liam needs to be in the best shape possible before undergoing a mitral valve regurgitation surgery.

Stacey and Matthew plan to drive 22 hours to Boston and find housing for a month so that Liam can be operated at Boston Children’s Hospital, which is “one of the best heart hospitals” with a high volume of mitral valves.

Having undergone two blood transfusions and one operation so far, they are focused on helping Liam “grow stronger” right now. But the future Boston-based surgery will come with a whole slew of even more difficulties: particularly the fact that Liam’s current health insurance is not accepted in Massachusetts. This means that the surgery, which costs hundreds of thousands of dollars, might have to come out of the couple’s own pocket. 

Still, as Stacey explains, “when they tell you that’s the [best hospital or doctor], you figure it out.” She says, “even if it’s costly, we’re going to have to figure it out. He can’t not have that surgery,” because his life is on the line. Even worse, Stacey was recently laid off from her job.

Stacey says “this is my normal now,” but financially, “it is so stressful.” While she “tries not to complain about it,” Liam’s situation, being laid off from her job, the cost of the second surgery, and even other issues like massive inflation and the current baby formula shortage are too much to handle. The pandemic also comes into play, because Liam contracting even a minor cold could put his health in serious danger.

In response, family and friends have set up a GoFundMe page for Liam, which will go to everything from the cost of the second surgery to other expenses like baby formula or even escalating rent.

Without “a break,” Stacey describes how you begin to feel “desperate.” Still, she says “anything helps,” and manages to remain positive amid troubling times.

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