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    Friday, May 24, 2024

    New NICU room brings comfort, privacy to grieving families

    Jona Sager of Alicia's Angels on Tuesday, June 25, 2019, shows the head wall with all the medical equipment, hidden behind a curtain, in the room the organization has created for families in the Neonatal Intensive Care Unit at Yale New Haven Children's Hospital. (Dana Jensen/The Day)
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    New Haven — Jona Sager lost her first child the day the baby was born 40 years ago. She never got to see or hold Alicia, and the only picture she has is of the casket.

    "The room they put me in, it was pretty horrible," she said. "It was a room they used to store medical equipment. They didn't want any other family to be around someone who lost a child."

    She still remembers the stains all over the bathroom and cracks on the floor. She still remembers that the blinds were broken. She still recalls that the blanket on the bed had a hole in it.

    Since that time, Sager, who lives in New London, became a nurse in the neonatal intensive care unit at Yale New Haven Children's Hospital, and she has taken care of a lot of babies that eventually died. A lot of families told her they just wanted to take their baby home.

    Without that as a possibility, she is trying to bring home to them.

    Three years ago, she started the nonprofit Alicia's Angels to "create beautiful homelike living spaces within hospitals, for families whose babies will not survive, to spend precious time with their children away from the medical environment." (Her nonprofit has no affiliation with a company of the same name that makes reborn dolls.)

    In late May, the first room opened on the 10th floor of Yale New Haven Children's Hospital.

    "All of the memories for the whole life (they) may have to make in these few hours or days, or sometimes weeks, and it just has to last forever," Sager said.

    She wants to see rooms like this across the country. She knows that's a big goal, but then again, so was getting to this point.

    UNICEF reports that 2.5 million children worldwide died before reaching one month of life, and according to the nonprofit Save the Children, more than 1 million die on their first day of life.

    In 2017, there were 160 infant deaths in Connecticut, according to the Centers for Disease Control and Prevention. Connecticut had the seventh-lowest infant mortality rate of any state that year, at 4.5 deaths per 1,000.

    Providing 'as much beautiful privacy as possible'

    To enter the room on the 10th floor with no context might be like walking into any nursery-bedroom hybrid; to walk in knowing why it's there is somber and surreal.

    The first thing you might notice walking through the glazed doors — to help provide "as much beautiful privacy as possible," Sager said — is the continuous soft plinking notes of Brahms' Lullaby. A tiny blue afghan is draped over the end of a crib, with a teddy bear perched in the corner. Another teddy bear smiles from the Murphy bed, below a print of a sea turtle.

    The children's books "Goodnight Moon," "Moo Baa La La La" and "Guess How Much I Love You" peek out from a basket on the end table beside a glider to rock the baby, next to a succulent and a Winnie the Pooh print.

    None of these choices was random.

    Sager researched what colors are scientifically considered the most calming and tranquil, and Interiors Haberdashery of Stamford donated custom-made draperies — striped in seafoam green, baby blue and cream — for the room. The linens also were donated, as were construction services.

    Behind the crib is a headwall of medical equipment and its necessary components — gases and suctioning and electric outlets. But there's a curtain that can shroud the board from view.

    "When we know that medicine can't do anything else, our goal was to cover up that medicine and have as much of a normal atmosphere at possible," Sager said. "When a family's ready to say goodbye to a baby, they don't need all that in their face. They don't need all that in their pictures."

    She said that as much as Alicia planted the seed, all the families that went through losing a newborn over her career are still here with her.

    One such family is Michael and Laura Michaud, whose daughter only survived six days in the NICU. That was nine years ago, and Michael recalls there were a few babies in a room and only one guest could go in at a time, making it hard for their family to visit.

    Sager was one of their daughter's nurses, and she approached the Old Lyme couple several years later about her idea.

    "It's been a satisfying experience, in knowing that we are going to be able to help future families. The overall goal is the room will never get used," Michael said. "For the families that do need it, we hope that it provides an extra comfort for them, and just makes the experience a little bit easier, gives them a chance to create some other memories while they're there, because who knows how long it will be."

    The Michauds are members of the board for Alicia's Angels, along with Evan Cooper, Steve Parker, Angela Pinkerton, Michelle Gray and Sager's husband, Rick. Gray is a family support specialist at Yale New Haven Children's Hospital, and Sager met Parker through the March of Dimes, a nonprofit devoted to the health of mothers and babies.

    Sager said the cost of the room was about $30,000, but that would be different at other hospitals, depending on how much construction is needed. Those looking to donate can do so at www.aliciasangels.org or on its Facebook page. Alicia's Angels also is holding a gala on Nov. 10 at The Woodwinds in Branford.

    The gala last year included a silent auction, the honoring of two people, and a magician to entertain children in a separate room while adults were talking about the cause.

    East Lyme residents Evan and Amy Cooper hold the Skate for Babies fundraiser every year for Alicia’s Angels. Their 11-year-old daughter, Molly, spent more than two months after she was born in Yale's NICU — with a few other babies, as Michael Michaud noted — before being able to go home. Sager was one of her nurses.


    Jona Sager sits on a murphy bed Tuesday, June 25, 2019, as she talks about Alicia's Angels while in the room her organization has created for families in the Neonatal Intensive Care Unit at Yale New Haven Children's Hospital. (Dana Jensen/The Day)
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    The seating and crib Tuesday, June 25, 2019, in the room that Alicia's Angels created for families in the Neonatal Intensive Care Unit at Yale New Haven Children's Hospital. (Dana Jensen/The Day)
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    Some of the little touches, including books, that can be found in the Alicia's Angels room. (Dana Jensen/The Day)
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