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Our son Jacob was born 10/01/1997, full term. It was not until his birth we realized something was wrong. Jacob was flown to St. Mary’s in Rochester, MN, right after birth, where they discovered he had a very severe form of pulmonary ateria with several vsd’s. My husband and I were young first time parents and all the news was very overwhelming. However, in spite of it all Jacob was truly a blessing. Jacob was able to go home after 7 days in the NICU. He went home on a strict medication and feeding schedule, we slept in 2 hour increments. Shortly after Jacob was home he started shaking, it was disregarded by our doctors, until it became so severe that is was apparent Jacob was having seizures every 5-10 minutes. Jacob was put on a ambulance headed to Rochester again, about 1 hour into the trip the EMT’s realized Jacob may not live they couldn’t stop the seizures. They went to the closest hospital and had Jacob air lifted. It was at this point I knew Jacob had much more wrong than just a heart defect. We were terrified of losing our only son. Once in Rochester they discovered the seizures were due to low calcium and that lead the doctors to believe this was DiGeorge Syndrome. A FISH test poofed in fact Jacob did have Digeorge. Jacob has had a difficult life medically, but to meet him you would never know it – he has faith so deep it is unbelievable. He loves life and loves everyone around him with all his heart. At 6 months old Jacob had his first open heart surgery and at 2 he had what was to be a complete repair of pulmonary ateria. Unfortunately Jacob’s body didn’t take well to the repair. He is left with a heart that goes from rib cage to rib cage and only 1 functioning lung. The doctors say Jacob will not live past his teenage years, but yet every 3 months when they see him they are amazed he is still here and seeming to function just fine with his unique heart. Jacob at the age of 3 went into shock because his adrenal glands shut down, his body stopped producing cortisol. He is now on replacement and will be for life. Life has been full of challenges for Jacob with speech, school, and physical activity, yet he seems to take it in stride. He is 12 years and 3 1/2 feet tall, just a adorable and amazing boy to know. As parents we count our blessings everyday and have learned how to truly live in the moment through Jacob. Yes, your life will be challenging raising a child with DiGeorge syndrome, but it also will be amazing.

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