Managing the health care of a child with complex medical issues
is challenging, even for the most organized parent.
To help a child achieve their potential and receive the best
care, parents (or the child's main caregiver) need to develop a
system of outlining medical concerns in addition to tracking
appointments, test results, medications, treatments and opinions
from health care professionals, says pediatric otolaryngologist Dr.
As associate professor of surgery and pediatrics director for
the Pediatric Cochlear Implantation Program at the University of
Chicago Comer Children's Hospital, Suskind understands how
overwhelming a new diagnosis can feel.
"With a new diagnosis, parents can be timid at first and that's
OK," she says. "As a physician, you see parents grow and develop.
Soon they are experts in the field and the diagnosis will become
less overwhelming and a part of their lives."
One way parents can monitor their medically complex child's care
is by creating a medical home, the American Academy of Pediatrics
advises. A medical home is accessible, continuous, comprehensive,
family-centered, coordinated, compassionate and culturally
effective medical care in which one doctor serves as the primary
care physician. The primary doctor speaks with other members of the
medical team, talks with the family about concerns and helps them
understand their child's options.
Oak Forest mom Maggie Boyce is creating a medical home for her
son Tommy, who has many health problems including an inability to
breathe without the help of a ventilator. (For Tommy's full story,
Boyce says she is hopeful that a medical home will improve
communication between all of her son's medical team members. A
majority of Tommy's doctors are located in Cincinnati; however,
because Tommy's primary health issue is life threatening, the Boyce
family has doctors in Chicago, too.
Communication is key
When seeking medical experts, Suskind suggests parents work with
professionals they can communicate with.
"Choose a physician who understands your concerns and is
intuitive, good natured and kind," Suskind recommends.
Everybody has busy days, but sometimes even doctors need to be
reminded to slow down and listen, she adds.
"Never feel you can't say something to your doctor or that you
can't ask a question. You are your child's best advocate," Suskind
Ask your specialists to communicate with other specialists on
your child's care team, especially before a surgery or another
"If the doctor doesn't suggest it, ask him or her, 'What can I
do to help you speak with my child's team of physicians?' "
Early intervention is the key to helping a medically complex
child live their life to the fullest, Suskind says.
"The more information you get, the better. Parents make the
biggest difference," she says.
Western Springs parent Cara Long agrees completely. Her daughter
Maggie was born with Down syndrome.
"As a baby she was N-G (naso-gastro) tube fed and she had home
oxygen. She had heart surgery at three months and was hospitalized
for a long time after that," Long says.
Maggie Long, now 12, is past the complex serious problems she
faced as an infant and through her childhood. Yet, the preteen
still needs to follow up with a number of specialists for her
checkups, Long says.
Tracking the large amount of history and paperwork a medically
complex child creates is a job in itself, Long says. She suggests
parents create a checklist to track the varied information. "There
is no way you can remember everything."
For some families, an Excel spreadsheet works well. Long places
the information school administrators, teachers and support staff
need about her daughter in a folder. Then she created a similar
folder with pertinent health and doctor information to leave for
Organizing the bills of a medically complex child can be
overwhelming too. Long uses a notebook and Excel spreadsheet to
manage that piece of Maggie's care.
Planning for the future
Detailed and thorough patient history is a crucial piece of
follow-up care whatever the medical condition, says Dr. Tara
Henderson, who treats adult survivors of cancer and serves as the
director of the Childhood Cancer Survivors Center at the University
of Chicago Hospitals.
In many cases a medical home is needed for a lifetime, Henderson
"Develop a summary to have on file and to take to every doctor
you see. Explain the diagnosis, offer the details and give a sense
of what has happened and why. This summary should include all
treatments-type of treatment, duration and place of treatment-a
list of medications taken and a description of the course of action
taken," Henderson advises. "Update all medical records yearly."
Because of the multiple and varied health concerns brought about
from childhood cancer, she has several specialists participate in
adult aftercare. These professionals include an endocrinologist, a
cardiologist, a reproductive endocrinologist and a
When following adult survivors of childhood cancer, Henderson
also screens the patient herself. She is up to date on the effects
of treatments and medications and can advise her patients of the
long-term effects. However, all patients need a primary
caregiver-in the case of children, often it is the pediatrician who
is seen for colds, bumps and other illnesses.
Always have an informative but brief medical summary in hand
when seeing any doctor, she adds.
"It is important for patients and their parents to have their
own patient summary," she emphasizes. "They need that summary for
Polly Stanoch Rix is a freelance writer who lives in Downers
Grove with her husband. She has two children.
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