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Braden was born on April 29, 2008 at 9:33 a.m. From about 23 weeks into the pregnancy, Jeff and I were told that there were complications with the pregnancy. We were told that his bones in his arms and legs were not developing like they should. We have gone through various genetic testing and eventually the specialists were able to locate where the problem was located. Essentially, Braden has a genetic mutation in his COL2A1 gene which has affected his bone development during the pregnancy. This mutation affects the development of collagen, which is necessary for his bone development.
Prior to his birth, the doctors were able to narrow his diagnosis to five different skeletal dysplasias. All of these diagnoses indicated that Braden would have respiratory issues when he was born. Thus, we were able to meet with doctors and specialists to try to prepare for what was going to lie ahead.
Immediately following his birth, Braden was put on a ventilator because he did have the respiratory issues. His lungs are underdeveloped and his rib cage is small, which is limiting the ability of his lungs to function. Since his birth Tuesday, his stability has been tenuous and there have been ups and downs. The doctors as of today's date have only been able to narrow his diagnosis to one of two conditions. The key issue is going to be whether his rib size and lung condition will ever make it possible for him to breathe on his own.
The doctors at Kosairs have enlisted the assistance of experts at Cedars Sinai at UCLA. This facility has a world recognized database for skeletal dysplasias. We have received guidance from this facility during the pregnancy, and now are awaiting their continued guidance. They are going to review his x-rays and we are hopeful that they will be able to provide a diagnosis. Once we have a diagnosis, then the doctors will be able to give us a prognosis for Braden.
We are hopeful that the diagnosis which he receives will also be accompanied by a hopeful prognosis. We only ask for everyone's prayers right now to help him get through this time, and provide us with the support to take care of him.