Advancement Services

For Kids LikeJacob

Jacob was born from a normal pregnancy, but after noticing low blood sugar and labored breathing, doctors performed a chest x-ray, which revealed his heart was the size of his entire chest cavity. Two weeks later, doctors at Lurie Children?s discovered it was due to Infantile Pompe Disease ? an inherited disorder caused by the accumulation of a complex sugar in the body?s cells. Without diagnosis or treatment, life expectancy for babies with Pompe Disease is less than one year. After aggressive Enzyme Replacement Therapy in the Cardiac Care Unit at Lurie Children?s, six-week-old Jacob was discharged home with a nasal gastric tube, supplemental oxygen, weekly infusion appointments, and multiple therapy appointments. Our Regenstein Cardiac Care Unit (CCU) is a state-of-the-art 44-bed unit devoted to the care of young patients with cardiac disease. The Regenstein CCU is one of the few cardiac units of its kind in the nation, allowing each child to stay in the same private room from admission to discharge. The high-tech rooms adapt to the level of care the patient needs, and eliminates the need to transfer the patient to other units in the hospital. Our rooms are technologically equipped for intensive care while providing the family amenities of a regular acute care patient room. Cardiac patients have the same healthcare team throughout their hospital stay. On his first birthday, Jacob and his family received news that they he no longer needed the feeding tube and oxygen support. Today, Jacob is a lively three-year-old who continues to beat the odds he was given, Jacob and his family consider their Lurie Children?s team a part of his family.