When a Child Truly Needs the Best
No, getting the right care at the right place isn't easy. Yes, you can make it happen
Charles Fraser
Chief of congenital heart surgery Texas Children's Hospital, Houston
How long: 1995 to present
What he does: Repairs hearts with complex defects
How many: More than 2,100 since 2000
Quirk: Likes his OR orderly and quiet—no music and a minimum of idle chat "I'm not especially fast. It's more important to me to be meticulous."
Robin Cotton Director, Otolaryngology and Head and Neck Surgery Cincinnati Children's Hospital Medical Center
How long: 1974 to present
Special skill: Rebuilds damaged airways
How many: 1,461 total reconstructions
Quirk: Answers parents' E-mails before dawn "I'll ask parents, 'Did you discuss this with your doctor?' I need to feel it's collegial, not competitive."
Billie Lou Short Chief of Neonatology Children's National Medical Center, Washington, D.C.
How long: 1980 to present
Notable: Helped pioneer ECMO blood-oxygenation technology in newborns
Point of pride: An early ECMO baby is starting med school
Quirk: Hosts annual ECMO conference in Colorado (she loves John Denver)"The challenge is,no one expects to havea sick baby."
Robert Baldassano Director of the Center for Inflammatory Bowel Disease Children's Hospital of Philadelphia
How long: 1996 to present
Age: 51
What he does: Manages chronic inflammation
Bowel resections he's had: 4
Med school nickname: Pops—he started at age 26. "When I came down with [Crohn's] I felt it was my responsibility to deal with the disease."
WHERE TO TURN
When children need help, those who care for them can get some from resources like these.
National Organization for Rare Disorders. www.nord-rdb.com. A rich (and free) source of information on treatments, patient groups, and financial services; has reports reviewed by experts on unusual conditions.
National Patient Travel Center. www.patienttravel.org/index.html. Arranges free or discounted travel through commercial carriers and private plane owners.
Parent to Parent USA. www.p2pusa.org. State-by-state organizations pair you with an appropriate mentor family; groups often host relevant workshops like "How to handle the Medicaid waiver program."
American Pediatric Surgical Association. www.eapsa.org. Parents/families section explains conditions and procedures; search function helps find APSA surgeons.
American Academy of Pediatrics. www.aap.org/parents.html. Provides a referral service for pediatricians and specialists; fact sheets explain subspecialists' roles; search by topic function.
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