Shayne and Megan Gaffney received quite the surprise when their daughter was born two years ago at Winchester Hospital with a medical condition called congenital cytomegalovirus, the leading viral cause of birth defects and developmental disabilities in children. Now, the couple hopes to help other parents be better prepared in the event their child receives a similar diagnosis through a bill that would require doctors screen for cCMV.
Currently, doctors don’t have to screen for the virus, so Shayne, a 2004 graduate of Wilmington High School, and his wife Megan, had no idea their daughter, Grace, would be born with any physical or mental ailments.
“I had no knowledge of cCMV,” Shayne admitted, adding that his daughter was born with hearing and visions issues, as well as Cerebral Palsy, plus white spots on her brain that affect mental development.
He said she couldn’t talk or roll like most babies and is still very developmentally delayed (she exhibits the mental and physical capacity of a three-month old as opposed to a two-year old). Grace is non-verbal and in a wheelchair. Shayne said she was born totally deaf, but now uses cochlear implants.
“She’s more smiley when the aids are in,” Shayne noted.
The main issue involves life expectancy, as children born with cCMV aren’t expected to live long. Some die within months. Vanessa Colleran, whom the Gaffney family became friendly with as they worked to get the bill before members of the House and Senate, had a son who passed away at a young age.
“After losing my sweet baby, Logan, to cCMV at just four months old, I believe it is critical to encourage the passage of this bill,” said Colleran, a Massachusetts CMV Coalition member who resides in Oxford with her husband and two children. “We need to bring this deadly virus out of the shadows and save future families from the pain and suffering caused by an infection that can be prevented with proper prenatal education. The preventative measures are simple and take just a minute to explain - don’t kiss your children on the mouth or share drinks, wash your hands frequently. Logan might still be here if I only knew then, so I am on a mission to make sure everyone knows now.”
As much as the Gaffney family tries to make the best of this situation, Shayne and Megan were initially blindsided by the diagnosis, especially because the doctors didn’t report any issues until the 35 week ultrasound.
“It was a huge shock,” he said, noting Grace was born one month early through an emergency C-section due to heart rate deceleration.
He said he and Megan went from an ultrasound to Winchester Hospital to have the baby delivered.
This scenario is probably common for any mother whose child suffers from cCMV. The problem is most don’t know anything is wrong until either the very last ultrasound or after the baby is delivered. Therefore, the Gaffney family worked with other families who have children with cCMV and State Senator Joan Lovely (D-Salem) and State Representative Kay Khan (D-Newton) on a bill that would require all doctors to screen for it.
Transmitted from mother to child during pregnancy, about 1 in every 200 babies are born with cCMV and around 1 in 5 of those will have long-term health problems, including hearing loss, mental disabilities, physical disabilities, vision loss, seizures, Cerebral Palsy, and even death. Infection is preventable but awareness is dangerously low – 91 percent of women do not know about it.
Under the bill, the state would be mandated to provide universal newborn screenings for cCMV. The virus goes largely undetected because a majority of affected babies are asymptomatic at birth - about 15 percent of infants with cCMV will have no symptoms at birth but will later develop hearing loss and other health issues.
Testing and early detection is critical for timely intervention and treatment, but because Massachusetts does not have universal screening, many children are not tested for cCMV until the limited window for treatment has passed, which can lead to long-term developmental issues.
Currently in Massachusetts, there is no policy on infant screening nor is it part of the normal screening process for infant diseases/disorders. If passed, Massachusetts would make history as the first state in the U.S. to require universal screening.
Shayne said he and his family spent months fundraising to hire a consulting firm to help create the bill and set up meetings with Sen. Lovely and Rep. Khan. Right now, the bill resides in the co-sponsor phase and the proponents have until Friday to shore up as many co-sponsors as possible. As of late last week, Shayne said they had about half a dozen.
When that period ends, the bill will eventually move into the hearing phase where Shayne, Megan and other proponents can testify before members of the committee. Hopefully, for the families, the bill moves out of committee and onto the House and Senate floors for a vote. If it passes, then it moves to the governor’s desk where he could sign it into law.
"I appreciated the opportunity to participate in a Zoom call last month with parents of children who have cCMV," said Sen. Lovely. "This conversation inspired me to file a bill to mandate education for prospective parents and ensure the Department of Public Health receives data on incidences of this disease. I look forward to working with Rep. Khan and the Massachusetts cCMV Coalition to pass this legislation to help families throughout the Commonwealth.”
While the legal process unfolds, the Gaffney family continues to undertake the difficult steps to care for their daughter. Fortunately, Shayne said they worked with a great team at Boston Children’s Hospital who were educated on cCMV. In fact, three days after Grace was born, thanks to lots of tests and scans, the doctors diagnosed her with the virus.
It wasn’t easy, as the family spoke with some 30 doctors in the beginning. Shayne called some of them harsh, but appreciated the others who had a better delivery when it came to talking about Grace’s condition.
She’s currently on medicine to keep the virus at bay. Shayne said anyone diagnosed must start the treatment within 21 days of birth.
Throughout this journey, the Gaffney family met 25-30 others families also struggling with cCMV through Facebook and other social media platforms.
“I was surprised early on to discover so many people suffering,” Shayne remarked.
10 of those families banded together with the Gaffneys to move this bill forward. The bill contains three parts: universal screening for newborns, prenatal mandatory education about cCMV from the midwife or OBGYN and data reporting to the state to further educate the public about the virus.
“No state has universal screening, but some have targeted screening,” the Wilmington High School graduate said.
He called it a “money” issue, but pointed out that universal screening would actually be less expensive. Targeted screening misses the majority of cCMV cases, he noted, resulting in added costs to the state.
With a hearing date possible for sometime in the spring, Shayne referred to this current waiting period as “nerve-wracking.” He admitted it was worth it for his daughter.
“The small things just don’t bother you any more,” he said about going through this trial with his family.