“He is truly our miracle! People and doctors alike are amazed at how well he is doing.”
Michael Bailey, Mosaic Trisomy 13, 8/06/2001, Big Sandy, TX
Updated text: Michael was born 2 months early due to the fact that I had high blood pressure. He weighed 3lbs 3oz. For the first month of his life, we thought we had ourselves a small, but healthy baby. The doctors told us that Michael had a few problems with his heart but that they were common in preemies and it should heal on its own. A month went by and they were sending us to a children’s hospital that had pediatric cardiologists on staff. First the doctor told us our baby has a heart defect called aortic stenosis and would need open heart surgery to survive.. What a shock! Then we had geneticists come into the picture.. telling us that with the heart defect our son has it is usually something genetic.. They ran tests. Tests that took months to get results back.. It was torture waiting.. The tests came back and it was positive for Trisomy 13..This means that he has an extra copy of the 13th chromosone. The geneticist told me not to bother doing the heart surgery- to just let my child die- because of the quality of life he would have..I told him that I would not play God. God gave me this baby and if He wants to take him that He would. I refused to just “let my child die.” Praise God we found a surgeon who would perform the surgery, so at 4 months old he had open heart surgery..That same day he was breathing on his own (which we were told he would never do). He is now 14 years old and still beating all the odds. He is truly our miracle! People and doctors alike are amazed at how well he is doing. He had his 2nd open heart surgery when he was 6yrs old.. and a third heart surgery (not open heart. They were able to go through his neck and replace one of his valves.) in March this year… and has had other minor surgeries along the way..and every time it is scary.. He will be having major back surgery soon with lots of risks….but just like He was there through that first 4 months of Michael’s life, God has always been right there by our sides protecting our precious baby and will continue to do so. We thank God every day for Michael- a little boy who the docs said if he even lived that his quality of life would not be worth anything..A little boy so full of life always wanting to help others- our miracle Michael.