BOBBYRetrun to 22q Stories
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Bobby was born on May 24, 2010. When he was born, the pediatric heart doctor stated he had a loud murmur being caused by a small VSD. She indicated that this happens a lot and usually by the first year in life, the hole would close on its own.
There were many times throughout Bobby’s first 10 months of life where he would turn blue on his hands and feet, stop breathing and have serious vomiting. We took him each time to her and she indicated none of them are a cause of his VSD. Being the parents we are, we took Bobby to another pediatric cardiologist in Albany, N.Y. We thought it would be a meet and greet appointment and would be on our way just having his records transferred to him. We waited for three hours for the doctor to come in to report all of his findings.
Bobby had his echocardiogram done, EKG, and X-ray. All came back good with the exception of his echo. The doctor indicated to us that Bobby had Tetralogy of Fallot, which involved four large defects of his heart and that he would need open heart surgery before his first birthday which was four weeks away. We were completely devastated! The doctor mentioned that this could be a cause of DiGeorge syndrome, all of which we knew nothing about.
Bobby continued to get sick a lot so we took him out of daycare up until his heart surgery to make sure he was well enough to undergo surgery. Bobby’s open heart surgery was at Albany Medical Center on May 12, 2011 and he did wonderful! He was on a vent for two days and had some issues with oxygen sat levels. His surgeon, doctors, and nursing staff saved his life! Most of all God saved his life.
We got the results of DiGeorge syndrome after his first birthday, which did come back positive. Our results came back negative, so purely Bobby getting this syndrome was a sporadic chromosomal defect. Bobby is delayed with fine gross motor skills and is getting physical therapy help. He will be evaluated by a speech therapist in a month. Overall, Bobby is doing wonderful! He is a true blessing to our family and is the most loving baby anyone could ever meet.
We always have comments on how well he behaves. He rarely fusses about anything. He has a big sister, Alexandra, who is 6 years old and just loves her baby brother. Bobby will continue to be followed by his pediatric cardiologist for his lifetime. He does have moderate stenosis of his pulmonary artery branching to his lungs, which may require a heart catheterization eventually. He doesn’t have a pulmonary valve any longer; so when he gets done growing, they will do another open heart surgery to put one back in. He has been seen by a kidney specialist, an ENT, and so far they gave him thumbs up for no defects in these areas. We have many more specialist appointments scheduled for him to be proactive in all areas. We’ve had many prayers for Bobby, they definitely have worked!!! Bobby is a blessing to us and we wouldn’t have him any other way.