10
Loading video...
By Daniella Gray
Reporter
0
Share
Newsweek is a Trust Project member
See more of our trusted coverage when you search.Prefer Newsweek on Googleto see more of our trusted coverage when you search.
From the moment her son was born, one New York mother couldn't shake the feeling that something wasn't right.
Lauren Musso, 28, from Schenectady, had been watching her newborn baby's movements for weeks.
The concerns had started months earlier, when she noticed a sudden change in his movements in the womb.
Read More on Family & Parenting
...
"Overnight, the strength and frequency of his kicks dropped dramatically and never returned," Musso told Newsweek. "I reported this shift repeatedly, but my concerns were dismissed because he was technically meeting minimum kick counts."
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.
Ultimately, the mom-to-be was left searching for answers and pushed for an ultrasound.
Although the test was not routinely offered, Musso said one provider agreed to order it, saying she could "make a case for it."
Musso said later scans showed her baby, Avery, remaining motionless for extended periods, but despite the warning signs, a fetal MRI was scheduled weeks later, with one specialist reassuring her that there was a "99 percent" chance he would be fine.
"Those words haunt me," Musso said. "I had a constant, eerie feeling that something was catastrophically wrong, that something rare was being missed, and that this constellation of strange events could not just be normal."
Weeks later, she would discover that she was right.
According to Dr. Jeffrey Chapa, the national medical director of maternal-fetal medicine at Obtelecare, reduced fetal movement is a relatively common concern during pregnancy.
While it is often linked to normal factors such as a baby's sleep cycle or placental position, it can sometimes indicate an issue with fetal wellbeing and should be evaluated.
"A maternal-fetal medicine specialist can help investigate what’s behind decreased fetal movement, particularly when it persists during pregnancy," Chapa told Newsweek.
"A detailed assessment of the baby, including an ultrasound examination, can be helpful. In some cases, concerns raised by the ultrasound can be further assessed 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 the Children's Hospital of Philadelphia, is a condition that causes the tissues around a baby's voice box to collapse inward slightly during breathing, often resulting in a characteristic squeaky or noisy sound.
"He began having persistent apneic and bradycardic events, eye deviation and strange movements that were continually passed off as normal newborn behaviors tied to laryngomalacia that would improve over time," Musso said.
Avery was re-admitted to hospital a few times. He was discharged, and a few days later, experienced his first cardiac arrest in a clinic.
His nanny was the first to perform CPR. On the day of his first cardiac arrest, Musso said she spoke to a neurologist at her son's bedside.
She described Avery's hand as "limp" and "lifeless," and begged for a full neurological workup.
Avery was eventually reintubated so doctors could perform a brain MRI which revealed multicystic encephalomalacia, a severe and irreversible form of brain damage.
Chapa said it is difficult to know whether an earlier diagnosis would have changed the outcome in any individual case, as severe brain injuries 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 advance planning with specialist teams before delivery.
"That’s why access to specialized maternal-fetal medicine care matters," he said. "Identifying a potential problem earlier means more time for a thorough evaluation."
Seizure activity was only formally identified days before Avery died, despite Musso saying she had been raising concerns about his unusual movements for weeks.
Avery spent his final weeks in the pediatric intensive care unit, much of it on a ventilator. He passed away at 3½-months-old peacefully, surrounded by the love of his family.
"I held him close and whispered to him how much I loved him, telling him that it was okay to go," Musso said. "When he took his last breath, I felt deep sorrow, but also an immediate, overwhelming peace for my beloved son. His body had been through so much, and he was finally free from machines."
Musso said the days following Avery's death felt surreal, as the family had only transitioned to hospice care the day before he died and had little time to process the reality of his condition.
While she struggled with the loss itself, she said she was equally devastated by what she viewed as preventable failures in his care.
Her grief deepened days later when she learned that an autopsy she and her family had explicitly consented to had not been carried out.
Musso said Avery's body was transferred to a funeral home without their knowledge, leaving the family without answers they had hoped would explain what happened and feeling that their trust had been broken.
"Our family lovingly calls him 'Ave the Brave,'" Musso said. "Avery remains an eternal example of how to offer unconditional love, no matter how heavy our circumstances may be. He taught us that even in the deepest darkness, we can still find profound love and human connection."
Musso said she hopes medical professionals take parents' concerns seriously and that more attention is paid to HG, the severe pregnancy sickness she experienced while carrying Avery.
She believes families should receive compassionate, individualized care and that warning signs should never be dismissed.
"Learn to sit with a grieving parent in the darkness without trying to fix the unfixable, and never be afraid to speak their child's name," Musso said. "Avery is our deeply loved son. His life was short, but his humanity, his joy, and his spirit are permanent, living forces in our lives."
The medical center under Avery's care declined to comment due to patient confidentiality.
View 0 Comments
Submit Correction
View Editorial & AI Guidelines