It was the kind of news every family fears during pregnancy. While still in the womb, their daughter Gracie was diagnosed with Down Syndrome and Hypoplastic Left Heart Syndrome (HLHS), a critical congenital heart defect where the left side of the heart doesn't form correctly.
UR Medicine doctors informed the mother, Janelle, and her family about the severity of Gracie’s condition. HLHS, which occurs in about one in every 3,841 babies born each year in the U.S., hampers the heart's ability to pump oxygen-rich blood to the body. Gracie would need multiple surgeries after birth to increase blood flow.
Unfortunately, because of pulmonary hypertension, Gracie was not a candidate for lifesaving open-heart surgery. She was expected to live only days after birth.
As difficult as this news was, Janelle and her family faced it with strength. A key source of support came from a multidisciplinary team of maternal-fetal medicine specialists, pediatric cardiologists, and palliative care specialists.
Janelle recalls, “We had everything set up with her palliative care team, cardiologist, everyone at the hospital. Plans were in place to get her comfortable as soon as she came out of me… plans were in place for my daughters to come up and meet their sister, and ultimately say goodbye.”
But Gracie herself changed everyone’s plans. After ten intense days in the hospital, she was strong enough to leave. Gracie's palliative care doctor suggested the family take her home with the help of UR Medicine Home Care services.
It was a chance to make memories with Gracie away from the hospital. The Home Care services would help make it possible by assisting the family in navigating care.
Supportive Care at Home
Gracie's Home Care social worker, Julie, along with other members from the UR Medicine Home Care pediatrics team, provides an array of services: social work, music therapy, emotional support through the child life program, and skilled nursing including palliative care services.
These programs and services have helped Gracie receive not only the healthcare she needs but also helps give her the chance to experience joy, love, and laughter, just like any other child.
Julie, the social worker, says of Janelle and families like hers: "I am amazed at the tenacity and the strength that these caregivers have... I enjoy learning about each family’s journey and getting to know all family members involved. I do what I can to support them, assist the family in developing needed skills, as well as enhancing existing skills necessary to care for their child. I also ensure these caregivers are taking care of themselves physically and emotionally."
Gracie’s journey has been more comfortable than anyone expected. The Home Care team has provided the family with a much-needed buffer between them and the complexities of accessing community resources, allowing them to focus on Gracie's needs.
“They will do whatever they can to make the journey enjoyable for you and your family," says Janelle. "They will be there to help you and hold your hand every step of the way.”
Today, Gracie is a delightful 22-month-old who continues to defy expectations. As her mom, Janelle, says, "Gracie has proved everyone wrong from day one."
Her family is cherishing her. Janelle says every morning starts with Gracie’s five-year-old twin sisters running to Gracie and telling her, "You're my best friend, Gracie. I just love you so much."
Moments like those remind the family how precious it is to have a team of support.