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Patient Stories

Jake's Story

"It took a team of pediatric specialists about 4 months to put Jake back together."

Jake LaRose with his dadSuperheroes aren’t just found in comic books and movies. Sometimes you find them in pediatric intensive care units. When four-year-old Jake LaRose arrived at the Emergency Department at NewYork-Presbyterian, he was near death. A virulent strain of E. coli stopped his kidneys from working and nearly destroyed his digestive system. A team of pediatric specialists needed to stop the infection, then rebuild Jake’s gastrointestinal tract. All in all, Jake needed five surgeries over a four-month period.

Jake was too young and too sick to remember the worst parts, but he does remember spending a lot of time in the Pediatric Intensive Care Unit. The Child Life team helped his mother create a book about the experience — a storybook with Super Jake as the hero, defying death and triumphing over the evil “bug” that had attacked him. Now six and living a normal life, Jake still asks his parents to read it to him at bedtime.

About Hemolytic Uremic Syndrome

Hemolytic Uremic syndrome (HUS) occurs when E. coli bacteria circulates in the bloodstream and attacks the intestines and the kidneys. It causes severe colitis and, in such cases, the entire colon dies and needs to be removed. It also attacks the kidneys and can cause kidney failure and the need for dialysis. HUS affects blood pressure and causes septic shock, where the bacteria takes over the body and affects blood clotting and all the critical organs. If left untreated, it can lead to death. HUS is treated with antibiotics, medicines that help support the blood pressure, surgery to remove the damaged colon, and dialysis until the kidneys recover.

 

The Komansky Children's Hospital Family Advisory Council

I feel so privileged to have had my child treated at an institution that embraces patient- and family-centered care at the core of its culture in pediatrics. My husband and I were so impressed by this and the incredible caliber of care Jake received, that we have both decided to give back to NYP by volunteering our time.

— Jake's mom, Kim, Member of FAC

The Komansky Center Family Advisory Council (FAC) is a group of approximately 30 volunteers, all of whom are parents of children who have been cared for either as inpatients or through the Pediatric Emergency Department at NewYork-Presbyterian Komansky Children’s Hospital.

FAC members engage with patients and their families through a variety of support programs. Additionally, FAC advisors collaborate with the Department of Pediatrics to improve safety, quality of care, and patient satisfaction. FAC family/faculty advisors also provide training for medical students, residents and nurses on the principles of patient- and family- centered care.