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Baby Genevieve: A Story of Strength

 

When Don and Shannon Harney brought their new daughter, Genevieve, home from the hospital to East Boston, she was a seemingly healthy baby without any signs of medical issues. However, within a few weeks she developed jaundice and was unable to gain weight. Her failure to thrive led to the diagnosis of Biliary Atresia, a chronic, progressive liver disease in which the bile ducts are blocked, causing damage to the liver and affecting many vital body functions.

To save her from this life-threatening condition, Genevieve underwent 12 hours of surgery to connect her liver directly to her intestine. The operation, called the Kasei procedure, removed the infant’s damaged bile ducts and brought up a loop of intestine to replace them. As a result, bile flowed straight to the small intestine. Although the surgery was successful, Genevieve’s liver was barely functioning, and she would soon need to have a healthy one transplanted. Also, because her immune system was extremely compromised, she required constant care surrounding blood transfusions and battling infections. The Harneys were forced to take many trips to the emergency room, with long grueling hours spent waiting for attention, and then explaining her story again and again to the doctors on call.

The family’s quality of life greatly improved when Carmen Menezes, a nurse from Partners HealthCare at Home, began providing care for Genevieve at their house, saving the family countless stressful visits to the hospital. Carmen monitored all of Genevieve’s vital signs - blood pressure, weight, abdominal circumference, intake/output and medications – and reported directly to the child’s doctor. Because Carmen was knowledgeable about Genevieve’s condition, the Harneys no longer had to constantly give new explanations to unfamiliar medical staff.

A few months after Genevieve’s first birthday, a portion of a liver finally became available, and she endured another complex surgery at MGH to receive her transplant. The operation was successful, and Genevieve’s health improved, but her post-transplant care is complicated, involving a host of medications to prevent the immune system from rejecting her new liver.  Although her prognosis was bright, she has been hospitalized several times again with serious complications, most recently with an intestinal blockage. Because Genevieve’s immune system is so extremely compromised, she can get sick very quickly, often going downhill within hours.

Carmen continues to visit Genevieve, watching over the toddler’s health, and providing the family with guidance and reassurance. She says that a crucial part of her job has been to teach the baby’s parents to understand when Genevieve’s symptoms warrant more medical attention. “Parents are used to seeing an incredibly sick child, and often can’t differentiate between what is normal and what is not,” she explains. “When they are in the hospital, there is so much coming at them, and they are distraught, tired, and in sea of confusion. Educating the parents gives them more control over their child’s care.”

Genevieve’s father Don says that the homecare from Carmen has been invaluable. “A lot of people don’t understand how soul crushing it can be to face that your child, at seven weeks old, has an incurable disease, and knowing that it will be a lifelong battle. Our family was traumatized, and Carmen was a lifesaver, answering questions, and in helping us navigate the healthcare system. She understood what we were going through and offered really good advice.”