Joe DiMaggio Children's Hospital Healthwatch Spring 2009
Family Bypasses Other ERs to Reach the 'Best'
Chronic Condition Requires Frequent Emergency Room Visits
Born prematurely, Kristen weighed just 2 pounds and her twin, Amanda, 1 pound, 10 ounces. For the first three months, they faced many complex medical issues typical of preemies in the Neonatal Intensive Care Unit at Joe DiMaggio Children's Hospital.
Although larger, Kristen had more serious complications, including bleeding in the brain, seizures and mild cerebral palsy.
"I nicknamed Kristen 'moose' and Amanda 'squirrel' because of their small, but noticeable size difference at birth," says Marc, the girls' father. "Right from the beginning, the girls demonstrated a strong bond and a drive to live that continues to amaze us."
Patient- and Family-Centered Care
Once home, the family soon began making urgent trips to Joe DiMaggio Children's Hospital's Emergency Room.
"Kristen suffers from seizures and has required frequent revisions for a shunt in her brain, so we literally drive past other hospitals to get to Joe DiMaggio Children's Hospital's Emergency Room," says Marc. "It's reassuring to us because the ER doctors know Kristen and her complex medical history. They can look at her and tell it's not Kristen's normal behavior. They know when something is wrong and how to help her."
Now age 6, Kristen has made more than a dozen visits to the ER and had more than 15 brain surgeries, which is not uncommon for children with cranial shunts. With so many visits to the ER, the twins' mother, Lynn, is grateful for a comfortable, family-friendly environment.
"Having twins, we have to bring Amanda along to the emergency room and there is support there for her, too," says Lynn. "There are clowns for a fun distraction and a playroom where Amanda can go so we can be there for Kristen and focus on her immediate medical needs."
In gratitude, Marc joined the hospital's Family Advisory Council, a group of parents, families and staff working together to help develop, organize and deliver patient- and family- centered care programs and policies.
"From providing input on the hospital design to contributing to new employee orientation, it is a clear example of the importance of the family-centered care philosophy at Joe DiMaggio Children's Hospital," says Marc. "Family is integral to the care process, as evidenced by our family's experience."
"No child wants to go to the emergency room, but at Joe DiMaggio Children's Hospital, their focus is on kids," says Lynn. "And as a mother, it is by choice that I drive past other hospitals to get to the best care possible for my children."
To find a Memorial physician who is committed to patient- and family-centered care, call Joe DiMaggio Children's Hospital Physician Referral Service toll-free at (866) JDCH-DOC. We're available 24 hours a day, 7 days a week.