Suzio seeks law to meet needs of stillbirths’ parents to grieve

Lawmaker seeks law to meet needs of stillbirths’ parents to grieve

New Haven Register

WOODBRIDGE — The emotional trauma of a stillbirth was compounded for Katie and Jim McGonigal when they found out that their daughter, Scarlet Suzy McGonigal, who they thought had been cremated, was in fact buried less than 5 miles from their home.

Feeling that they were forced to make a decision shortly after Scarlet’s birth about how to deal with their daughter’s remains, the McGonigals since have been in a legal battle with Yale New Haven Hospital. They say their goal is for the hospital to change the policies that determine how soon after a stillbirth the parents must make heart-wrenching decisions.

The hospital has resisted even disclosing its policies, but what the McGonigals haven’t won in their civil suit they may achieve in legislation.

The couple originally sued Yale New Haven in 2017 for at least $50,000 for their pain and suffering and to get the hospital to allow at least 24 hours for a grieving family to decide what to do about their deceased child.

Scarlet was born at 3:41 p.m. July 18, 2015, according to their lawsuit. At 4:25, while Katie McGonigal was septic and still on a morphine drip, she was asked to sign an authorization to release the remains.

She chose burial, even though she and her husband preferred to have their daughter cremated, the suit claims.

The hospital offered $500, then $1,500, Katie McGonigal said, but “at the time when they offered us their compromise it didn’t include the policy and procedures for stillbirth. They still hadn’t shared it with us,” she said.

“The bottom line for this is that the mistake that happened for us … don’t ever happen again,” Jim McGonigal said. “Without offering to change their policies, that was an obvious no from us.”

On Jan. 16, the McGonigals offered their own compromise: $10,000 — $3,000 for attorney’s fees and $7,000 to help support a nonprofit organization that will donate CuddleCots to area hospitals.

They have started a YouCaring page, Scarlet’s Mission, that has collected more than $1,000 in donations so far.

They also want Yale New Haven to buy 10 CuddleCots, which cost $3,000 each, for Yale New Haven Health’s hospitals in Bridgeport, Greenwich, New Haven, New London and Westerly, R.I.

The devices, made by the English company Flexmort, consist of a cooling pad placed in a “Moses basket,” similar to a bassinette, which allows the family to spend time with their deceased child before decomposition begins.

Finally, “we would like for them to include a 24-hour window of time before asking parents to sign off on the arrangements of the remains,” Katie McGonigal said, and for a social worker to be assigned to counsel the parents. “They don’t specify any time in their policy,” which is 5 years old, she said.

Story moves legislator to act

The New Haven Register told the McGonigals’ story in April 2017: How they had discovered the gravesite in Evergreen Cemetery in New Haven, marked only by a disk numbered 487 among hundreds of other such gravesites, how they had moved Scarlet to Eastside Cemetery near their home and erected a memorial bench, and how they had planted a memorial garden, where their children from previous marriages, Áine McGonigal and Miles Spodick, now 8 and 10, could think about the sister they never knew.

Among those who read that story was state Sen. Len Suzio, R-Meriden, who was so moved he introduced Senate Bill 325, which would require hospitals to give parents of stillborn children 24 hours to make a decision about stillbirth remains.

Suzio met Katie McGonigal for the first time when she testified in favor of the bill. “He was so happy to meet me and see me and he was so gracious,” she said.

“He made a point on public record of saying this all came about after reading our story,” she said.

“I wouldn’t have known about it if it wasn’t in the Register,” he said.

In her testimony, McGonigal said that at 26 weeks pregnant, “I went into spontaneous labor and was told, after arriving at the hospital, that our daughter had passed. I spent six hours laboring on a morphine drip, knowing that our baby was gone.

During that time, we were visited by several doctors and nurses who spoke to us about a variety of postpartum options regarding our daughter.

“They asked us if we wanted to hold her. They asked us if we wanted pictures. They asked us if we had a name for our child. They asked us what we wanted to do with her remains,” she said. “All of these questions were asked of me as I labored a child we knew was gone. Between the pain of labor and the emotional pain of knowing our world was crashing in (not to mention the clouded thoughts of being on morphine) the hospital needed us to make a decision on what to do with our baby’s remains.”

She called the events “even more horrific than we could’ve ever imagined.”

Because they wanted an autopsy and wanted Scarlet to be cremated, the McGonigals were told “there’d be almost nothing left to save. Basically she would be disposed of with medical waste.”

Sixteen months later they found out Scarlet had been buried.

In the meantime, Althea Hope McGonigal was born.

“They call a baby born after a stillbirth a rainbow baby … because after a storm comes a rainbow,” Katie McGonigal said. “Everything just kind of lifted. Here she is, we have her, only to find out later … that Scarlet was buried 5 miles from home. It was a secondary trauma that really hurt our celebration of Althea’s birth.”

Both NARAL Pro-Choice Connecticut and the Connecticut Catholic Public Affairs Conference testified in favor of the bill.

The Connecticut Hospital Association, however, cautioned that the language was “not fully coordinated with existing laws relating to burial of human remains, including fetal remains and stillborn births” and asked for a review by the state Department of Public Health.

In order to move the bill out of the Committee on Children — Suzio is the Senate Republican co-chairman — Suzio had it rewritten to call for a study by the public health commissioner to be completed by Jan. 1, 2019. That version passed the committee 12-0.

Knowing he could amend the bill later, Suzio said he altered it because “I was risking the chance the bill might fail” if hospitals did not have input.

“It was a way of keeping the bill alive without killing it,” Suzio said. “Now that it’s alive I can resuscitate it and amend it accordingly.”

Michele Sharp, spokeswoman for the Connecticut Hospital Association, issued a statement about the study proposal: “We opposed the original bill primarily because it provided for a new notice requirement, and hospitals want to ensure that any new effort is coordinated with existing statute. We support the language that came out of Committee to study the issue. Clearly the Committee recognized that it is important to examine this issue closely to be sure it is done in a coordinated way.”

Suzio, who has met with officials from Yale New Haven and the hospital group, believes he will be able to amend the bill so that it answers the concerns of both the McGonigals and the hospitals.

“My goal is to hope we can find some acceptable wording in the next five or six weeks,” he said Friday. “I’m reasonably hopeful … we can get something done that would be satisfactory to everybody. … I’m going to try my hardest to get something passed.”

Suzio said he and Senate Republican President Pro Tempore Leonard Fasano, R-North Haven, met with Yale New Haven officials about the 24-hour window. “They said, ‘That sounds reasonable and we’ll take it back and get back to you,’” he said.

The senators also urged the hospital to buy the CuddleCots as an “altruistic” gesture, which Suzio said also was greeted favorably.

Dana Marnane, communications director for Yale New Haven Health, said she could not comment because of the litigation.

Asked for a copy of the hospital’s policy on disposing of stillbirth remains, she wrote in an email, “I’m told that we do not share internal documents.”

Time to say goodbye

The McGonigals think the cooling beds are important because, as Katie said, “What happens is stillborn babies are pretty quickly brought to the morgue to preserve their bodies. Nature is not kind.”

Jim McGonigal said that, with the cots, “Extended family would also have the opportunity if they wanted to visit.”

A charity similar to the one the McGonigals would like to form, called Annabella’s Angels, has donated CuddleCots to six hospitals in Connecticut, according to its website: St. Mary’s, Waterbury, St. Francis, Hartford, Bristol and Bridgeport, which is a Yale New Haven Health hospital.

The goal of both the McGonigals and Annabella’s Angels is to place CuddleCots in every hospital in the state.

“We think that these CuddleCots are an important piece of the puzzle as well,” Jim McGonigal said. “And we’ve been through so much at this point … I don’t think it’s something that we could give up on.”

Katie McGonigal said she talked to someone at St. Mary’s in Waterbury about the cots. “I asked them how often they were used and the nurse that I spoke to gave a really long pause and said, ‘They’re used for every fetal demise.’”

Michelle Jose, a registered nurse and lactation specialist at St. Mary’s Hospital, said its CuddleCot gives families “time to say goodbye, have other family members come in” and to take photos, fingerprints and handprints or save a lock of hair. “It is offered to any family that has a loss,” Jose said. “Not every family takes advantage of it. … Everybody grieves differently. … I would say the majority of parents take advantage of it.”

https://www.nhregister.com/metro/article/Lawmaker-seeks-law-to-meet-needs-of-12779094.php