A woman’s greatest joy can be finding out they will soon be a mother. Whether it is seeing the baby on an ultrasound monitor or hearing the baby’s heartbeat, it provides comfort and excitement to know a new life is growing inside her womb.
For Mareesha Nalley, 32, of West Haven, she had the opportunity to do both, but she received unexpected news when she was only ten weeks pregnant.
Through testing before her first ultrasound, Nalley found out her baby was diagnosed with Trisomy 18, a disorder in which the baby is born with three copies of chromosome 18 instead of two.
“I was sad and worried because most Trisomy babies don’t make it. That was my biggest fear,” said Nalley.
Also known as Edwards Syndrome, doctors said there is a high likelihood of stillbirth and five to ten percent of the babies can survive up to their first birthdays, but it is very uncommon.
The disorder can cause intellectual disabilities, deformities or short life expectancies.
However, according to Dr. Katherine Kohari, MD, FACOG, associate director of Yale New Haven Children’s Hospital and medical director of Yale New Haven Hospital’s Maternal-Fetal Medicine program, stated not all babies pass away. Some remain in the hospital for a long period of time, some are discharged from the hospital, and some go to home palliative care.
Dr. Kohari was one of the doctors who had cared for Nalley during her pregnancy. She said it is never easy to break the bad news to mothers about their baby’s condition, but knowing how to approach the conversation with empathy and comfort.
“To make a family feel that their child isn’t just a bunch of abnormalities, that their child has value and is important to them regardless of what their diagnosis may be,” said Dr. Kohari.
Nalley said the news was tough to swallow at first, but easily knew what her final decision would be.
“I just cried because I never imagined having a child with a disability. I knew from the beginning though that I wanted to keep her, and I wanted to fight and give her the best opportunity to live and not just decide her life wasn’t worth living,” added Nalley.
Nalley had named her Baby Halo.
Doctors at Yale New Haven Children’s Hospital (YNHCH) prepared Nalley to lose Halo in the womb because Halo had a heart defect and was developing slowly. But Nalley gave birth to Halo in November of 2023.
Immediately after birth, Halo was rushed to the Neonatal Intensive Care Unit (NICU) to be intubated, and nurses had encouraged Nalley and her son to spend more time with Halo before she would pass away.
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In memory of Halo
A room in the NICU is dedicated just for these special moments. Designed by the nonprofit Alicia’s Angels, the room is a homelike living space for families, whose babies will not survive, to spend precious time with their children away from the medical environment and to create a lifetime of memories from those brief moments.
Approximately 17 hours after being born, Halo sadly passed away.
Nalley, though had been able to sit with her for an hour as a chaplain prayed over them. Shortly after, Nalley was able to bathe and dress Halo.
“You’ll hear so many different things from so many doctors, but ultimately, it’s up to you on what to do and how to go about it because in the end, this is your child,” added Nalley.
Diana Giasullo, RN, assistant patient service manager, Maternal Fetal Medicine, YNHCH, is one of the nurses on the Perinatal Palliative Program. Giasullo remained by Nalley’s side from the beginning.
During her three and a half years at the hospital, Giasullo said she has seen well over 40 to 45 Trisomy 18 cases with varying pregnancy outcomes dependent on the families’ cases, but on average, the survival rate ranges from stillbirth to two weeks.
Giasullo stated this program offers pre-natal and postnatal testing which helps determine when the best time is to deliver the baby.
YNHCH’s Perinatal Palliative Care program puts a strong emphasis on support for its families and coming up with a plan to celebrate the life of the child. Families in this sort of situation will receive palliative care beginning with the baby’s medical diagnosis and continuing throughout the mother’s pregnancy, delivery and postnatal period. These services are provided at no cost and can occur in all care areas including, potentially, the families’ homes. Services include – phone calls made to the families to check in, cards are sent in the mail, mental health resources, and access to various community groups.
“We are so multi-disciplinary. We meet patients from all parts of the continuum of care and we obviously have a large pre-natal presence. We have our in-hospital neighborhood floor presence, we have NICU presence as well,” added Dr. Kohari.
“We really try to focus on the mom having a pleasant pregnancy so they can truly bond with their baby,” said Giasullo.
This can include providing families with pictures of the baby’s face, hands or feet, creating molds of the baby’s footprints and audio recordings of the heartbeat.
In some cases, after the baby has been diagnosed with Trisomy 18, more invasive testing may be offered to mothers who want more information about the disorder, but others may decline the testing and just wait.
In Nalley’s case, a Build-a-Bear was created to honor items that were unique to her – such as her love for butterflies. Inside the bear’s paw was Halo’s heartbeat recording with a heart-shaped ultrasound photo on the outside.
Once the baby passes, the mothers and their families decide what they wish to do with the baby.
For the past two years, YNHCH has held a Fetal Care Center family reunion. Families who were cared for by the center enjoy a few hours at the Beardsley Zoo to spend time with doctors and nurses, enjoy the food trucks, arts and crafts and to be away from a medical space.
“One of the things I always say is I know two things are for certain: there’s nothing you did that caused this and two, we’re never going to abandon you. We’re going to be here to support you,” added Giasullo. “The one thing I always tell them that I wish I can do is wave a wand and take this away, but I can’t so the next best thing I can do is just know that I’m going to be here and we’re not going anywhere.
While Nalley’s pregnancy resulted in a loss, she stated there was no hesitancy in trying to have another baby.
“This definitely did not make me scared to have more children at all. I’m actually excited to have more children,” added Nalley.
Learn more about Yale New Haven Hospital’s Perinatal Palliative Care Program.
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