The website and app allow patients and caregivers to view medical records and interact with their care team.
Rebecca Rose Marcinauskis began life on her own terms, coming into the world three weeks early, in her family’s car as her parents were driving to the hospital.
For the entire family, that dramatic birth was just the beginning of a remarkable journey that has been overwhelming, stressful, and ultimately, gratifying.
Rebecca was born with an extremely rare genetic disorder caused by a partial duplication of chromosome 17. Only four cases have been reported worldwide. Her symptoms have included failure to thrive as a baby, severe allergies, delays in the development of motor skills, seizures and hydrocephalus (also known as “water on the brain”). She suffers from a number of other serious conditions as well, including Arnold-Chiari Malformation, where brain tissue extends into the spinal canal, and avascular necrosis of the hip, where bone tissue at the top of the femur (thigh bone) dies, due to a lack of blood supply.
Rebecca’s complex medical condition was not the only test of the Marcinauskis family’s strength. When Rebecca was 9 months old and in the hospital for the third time in her short life, the family’s home in Shelton caught fire and burned down.
“We were a family in crisis,” says Laura Marcinauskis, Rebecca’s mother. “It’s been a lot. The amount of stress was ridiculous. You don’t realize that you’re capable of handling everything until you’re in it.”
The family has come a long way since those unimaginably difficult early days. Rebecca, now 12, is medically stable. She has a loving relationship with her family—parents Laura and John, brother Bobby, 15, and sister Emily, 16. She loves playing with her extensive collection of dolls. Rebecca could only say three words at the age of 3, but today she can hold simple conversations and is learning to read. Laura hopes that, as an adult, Rebecca will “be able to be a part of society in a meaningful way.”
The Marcinauskis house was rebuilt after that devastating fire, and its walls are covered with photos and portraits reflecting a close and happy family.
MyChart helps coordinate complex care
And while Rebecca’s medical needs are still demanding, the family has a new tool for coordinating her complex health care. It’s MyChart, the secure website and app, which allows patients and their caregivers to view their medical records, request appointments and prescription refills, communicate with their doctors and more—all from the convenience of their phone, tablet or computer.
In addition to empowering patients, MyChart enables doctors and health care organizations to see the “big picture” for each individual, all in one place—including all of their physician visits, medications, hospitalizations and allergies. This makes it easier for health care providers to coordinate care that is truly patient centric.
For Rebecca’s mother, Laura, MyChart has made an enormous difference. During her short life, Rebecca has been hospitalized 24 times. She’s had 58 CT scans and MRIs. She is treated by a team of about 10 specialists, as well as physical, occupational and speech therapists.
Every time Rebecca had to be hospitalized or started seeing a new physician, Laura would bring along a three-page “resumé” describing Rebecca’s diagnoses, her recent hospitalizations and doctor’s visits, and her surgeries, medications and allergies. Most doctors knew little about Rebecca’s genetic disorder because it is so rare, so it was up to Laura to provide the details.
Now, with MyChart, all of that information is in one place. It is automatically updated and easily accessible to all of Rebecca’s doctors and to Laura.
A communications tool
“She’s complicated. Her care is incredibly complex,” Laura says. “As the parent of a child who is so unique, I ended up being the communicator to all of her doctors.”
Now MyChart does much of the communicating for her. When Laura is in a stressful situation, like going to the emergency department or meeting a new doctor, she no longer has to remember every detail about Rebecca’s medical issues. MyChart also makes it easy for Laura to keep track of Rebecca’s many upcoming medical appointments and prescriptions. And, when she needs to communicate with the entire care team, she can find all of their names and e-mail addresses in one place.
As a member of the Yale New Haven Children’s Hospital Family Advisory Council, Laura has been a strong advocate for MyChart, and she had some input into making the MyChart application as user-friendly as possible for Children’s Hospital families. She says she would recommend MyChart to everyone, and especially to families caring for children or elderly relatives.
“It’s huge, it’s absolutely huge,” Laura says. “If you have an elderly parent, you don’t have to think about what mom’s meds are, or when we saw the doctors last. It’s all there.“
Rebecca’s situation continues to be exceptionally challenging, but Laura is proud of how far her daughter has come.
“When you have a little girl looking back at you, it gives you the reason to get out of bed. It gives you that reason to go fight,” she says.
Source: Yale University