Parents Find Hope After Loss In Memory Of ‘Perfect’ Baby

LINDENHURST, NY — Michelle McQuillan was a new mom, reveling in the joy of her “perfect baby,” when suddenly, her world turned upside down and she was faced with the unthinkable — a condition so rare that he was one of only four cases diagnosed nationwide.

And sadly, her son Liam’s journey ended in heartbreak: On February 25, 2021, Liam unexpectedly died from complications related to undiagnosed variation of Williams Syndrome. He was just 10 months old.

Williams Syndrome is a developmental disorder that can affect multiple parts of the body, including cardiovascular disease, formative delays, and learning challenges. According to the Cleveland Clinic, symptoms can vary to different degrees, and people with Williams Syndrome can live long lives.

But that was not Liam’s story.

McQuillan and her husband Sean recently launched Liam’s Heart, a non-profit organization aimed to raise awareness about Williams Syndrome, and to support children diagnosed with the condition.

“The purpose and the mission of Liam’s Heart is not only to serve as Liam's memory and his legacy — but to really support other families with children, either with Williams Syndrome or other congenital heart defects, that are very serious or life-threatening,” McQuillan said.

McQuillan told Patch that Liam, her first child, was a happy and peaceful baby from the moment he was born in April 2020.

“In the hospital they said, ‘Okay, make sure you feed him every two hours — you won't have the time to sleep,’” she said, remembering his birth. “I slept through the night.”

McQuillan, who works from home, said that she was grateful to have had so much one-on-one time with Liam, who was the “perfect” baby. He had a great love for music, she said. One of his favorite shows was Sesame Street, and her son loved Elmo.

“We have Elmo all over our house,” she said.

Music also played a big role in his development. McQuillan told Patch that Liam loved Disney’s “Moana” soundtrack so much that she would use the songs to help him crawl. She would later learn that a deep affinity for music is a strong indication of Williams Syndrome in children.

“I only got him to crawl to chase after my phone for the ‘You’re Welcome’ song,” she said. “Quite literally, he hit milestones because of Moana.”

At his nine-month checkup, McQuillan said that the doctor thought he heard a heart murmur in Liam’s chest. She and her husband then took him to a cardiologist.

“They discovered it was probably a whole lot more,” McQuillan said. “But they talked maybe like a minor surgery, maybe medication — nothing alarming.”

McQuillan was also told that Liam did not appear to have characteristics associated with Williams Syndrome.

According to the National Library of Medicine, children with Williams Syndrome often display certain physical features, such as a broad forehead, a short nose with a broad tip, full cheeks, and a wide mouth with full lips.

“They were so sure that it was not like a traditional thing that they had seen before,” McQuillan said.

Two weeks later, McQuillan and her husband brought Liam into the hospital for a sedated CT and echo scan. Liam woke up from the anesthesia fine, she said, but went into cardiac arrest shortly after.

“We did not come home from the hospital that night,” McQuillan said.

In the two months that followed, McQuillan and her husband had genetic testing done, to learn more about Liam’s condition.

At that time, the couple saw an outpouring of love from the community — so many people wanted to donate money or give back, in support of her family. McQuillan wanted to find a way that the donations could honor her son’s journey.

McQuillan and her husband started a Mighty Cause page, while the search for answers was ongoing.

“When we figure out what he has, we will do something in that honor,” she told donors.

In May, they received Liam’s final diagnosis — a variation of, or, something “like,” Williams Syndrome.

McQuillan learned that the variation is so rare, that Liam was only one of four cases diagnosed in the country. Liam’s case is currently being studied by the National Institute For Health, she said.

“My husband was very frustrated, very angry,” she said, adding that he wished his son’s rare condition had been diagnosed sooner.

She told Patch that while it was devastating and frustrating to receive a diagnosis which was originally dismissed, she tries to focus on the gift of time she was given with her son.

“I've never had it in me to feel frustrated or angry,” McQuillan said. “The two weeks that passed between going to the cardiologist and going to the hospital, if we would have been admitted to the hospital immediately, and they would have done those tests, maybe I wouldn't have had those two weeks.”

Last year, knowing they wanted to help other families traveling an uncertain road, the McQuillans established “Liam’s Heart”, to spread awareness and support children with the syndrome.

In December, Liam’s Heart donated $3,521 to Boston’s Children’s Hospital, which has a large Williams Syndrome clinic, as part ofa Virtual Toy Drive. The organization also donated $2,500 for an emergency fund drive, for parents who may not be able to take off work to be with their sick children.

Liam’s Heart also plans to support funding for children’s music therapy, scholarships for college students with Williams Syndrome, or fees for Camp Blue Skies, a summer camp specifically for children with Williams Syndrome.

McQuillan said she also has many projects and fundraisers planned, the next being the first ever Liam’s Heart Walk, which will be held on June 12 in Robert Moses State Park.

Since the creation of Liam’s Heart, McQuillan told Patch that she has received a tremendous sea of support from Lindenhurst residents.

When she recently asked for graphic design help for the Liam’s Heart walkathon on the Lindenhurst Moms Facebook group, McQuillan received more than 100 comments and numerous personal messages. Not only did a graphic designer offer help, but there was also an outpouring from other businesses, as well as Momessages of love and support.

“We're not from Lindenhurst. We've been here for about seven years and we don't really know anyone,” she said. “So to have 300 people that you don't know and you've never spoken to and you have no relationship with — just the love that people shared was so special.”

McQuillan said that their acts of kindness have only ensured her and her husband that they made the right decision to move here seven years ago.

“It really made me very grateful that we live here and excited to stay here and have more children,” she said. “To think that Liam would have played with these people's kids, it just feels very special to be part of this community.”

To learn more about or register for Liam’s Heart Walk, click here.

To learn more about Liam's Heart,click here.