From the moment her son was born, a New York mother couldn’t help but think something was wrong.
Lauren Musso, 28, of Schenectady, had been monitoring her newborn’s movements for weeks.
The concerns had started months earlier, when she noticed a sudden change in her movements in the womb.
Mom Lauren Musso pictured with baby Avery.
“Overnight, the force and frequency of his kicks dropped dramatically and never came back,” Musso said. News week. “I reported this change multiple times, but my concerns were dismissed as it technically met the minimum number of kicks.”
Musso’s pregnancy had already been marked by severe hyperemesis gravidarum (HG), a condition causing extreme nausea and vomiting, which she said left her repeatedly hospitalized and struggling to keep down food and water.
In the end, the mom-to-be had to search for answers and requested an ultrasound.
Although the test is not routinely offered, Musso said one provider agreed to order it, saying she could “make her case.”
Musso said subsequent scans showed her baby, Avery, lay still for long periods of time, but despite warning signs, a fetal MRI was scheduled weeks later, with a specialist reassuring her that there was a “99 percent” chance he would be fine.
“These words haunt me,” Musso said. “I had the constant, strange feeling that something was seriously wrong, that something rare was missing, and that this constellation of strange events couldn’t just be normal.”
A few weeks later, she would find out she was right.
According to Dr. Jeffrey Chapa, national medical director of maternal-fetal medicine at Obtelecare, reduced fetal movement is a relatively common concern during pregnancy.
Although it is often linked to normal factors such as the baby’s sleep cycle or the position of the placenta, it can sometimes indicate a problem with fetal well-being and should be evaluated.
“A maternal-fetal medicine specialist can help investigate what’s behind decreased fetal movement, especially when it persists during pregnancy,” Chapa explained. News week.
“A detailed assessment of the baby, including an ultrasound, may be helpful. In some cases, concerns raised by ultrasound can be further evaluated with other imaging modalities, including MRI.”
When Avery was born, he spent a week in the neonatal intensive care unit. Although he seemed to be improving, Musso said he struggled to gain weight.
He also developed laryngomalacia, which, according to Children’s Hospital of Philadelphia, is a condition that causes a slight collapse of tissue around a baby’s voice box during breathing, often resulting in a characteristic squeaky or noisy sound.
“He began having persistent apneic and bradycardic episodes, ocular deviations and strange movements that were continually presented as normal newborn behaviors related to laryngomalacia and would improve over time,” Musso said.
Avery was readmitted to the hospital several times. He was discharged and, a few days later, suffered his first cardiac arrest in a clinic.
Her nanny was the first to perform CPR. On the day of his first cardiac arrest, Musso said he spoke to a neurologist at his son’s bedside.
She described Avery’s hand as “limp” and “lifeless” and requested a full neurological assessment.
Avery was eventually reintubated so doctors could perform a brain MRI that revealed multicystic encephalomalacia, a severe and irreversible form of brain damage.
Chapa said it’s difficult to know whether earlier diagnosis would have changed the outcome in an individual case, because severe brain damage can have multiple causes and the underlying reason is not always identified.
He added that some conditions cannot be prevented or reversed, even when detected early, while others may benefit from prenatal treatment or pre-planning with specialist teams before delivery.
“That’s why access to specialized maternal-fetal medicine care is important,” he said. “Identifying a potential problem earlier means more time for a thorough evaluation.”
The seizure activity was not formally identified until days before Avery’s death, although Musso said she had raised concerns about his unusual movements for weeks.
Avery spent his final weeks in the pediatric intensive care unit, largely on a ventilator. He passed away peacefully at the age of 3 and a half months, surrounded by the love of his family.
“I hugged him and whispered to him how much I loved him, telling him I could leave,” Musso said. “When he took his last breath, I felt deep sorrow, but also immediate and immense peace for my beloved son. His body had endured so much and he was finally free from the machines.”
Musso said the days after Avery’s death felt surreal, as the family had only moved into hospice care the day before she died and had little time to understand the reality of her condition.
While she struggled with the loss herself, she said she was also devastated by what she saw as avoidable failures in her care.
Her grief deepened days later when she learned that an autopsy to which she and her family had explicitly consented had not taken place.
Musso said Avery’s body was moved to a funeral home without their knowledge, leaving the family without answers they hoped would explain what happened and with feeling their trust had been broken.
“Our family affectionately calls him ‘Ave the Brave,’” Musso said. “Avery remains an eternal example of how to offer unconditional love, no matter how dire our circumstances. He taught us that even in the deepest darkness, we can still find deep love and human connection.”
Musso said she hoped medical professionals would take parents’ concerns seriously and that more attention would be paid to HG, the serious pregnancy illness she suffered while carrying Avery.
She believes families should receive personalized, compassionate care and that warning signs should never be ignored.
“Learn to sit in the darkness with a grieving parent without trying to fix the unfixable, and never be afraid to say their child’s name,” Musso said. “Avery is our deeply loved son. His life was short, but his humanity, joy and spirit are permanent living forces in our lives.”
The medical center Avery serves declined to comment due to patient confidentiality.
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