We arrived at 9:00. I remember that I couldn't even tell the receptionist my name through the tears. Another receptionist knew what was going on and just told me to take a seat. Soon Erin Eaton, the genetic counselor, came out to get us. She took us into a small room to talk about the events from yesterday. I had read the pamphlets and found out that there were 3 kinds of Spina Bifida. Occulta, meningocele,and myelomeningocele. I thought for sure our baby wasn't that bad. She stopped me before I could get any hopes up and informed us that they had diagnosed the worst kind, myelomeningocele. I fell all to pieces so she left the room for a moment. She returned and took us to another room to talk with Dr. Goodnight. He informed us of the defect we were facing. Our baby had an L4 lesion, 12-13mm. of cerebrospinal fluid on his brain, and clubbed feet. He would probably have to walk with braces up to his knees, have no bladder or bowel control/function, and possible brain damage. He was so patient and kind with us that day. He took it real slow showing/informing us of the defect and how they could possibly treat it with utero surgery. He even gave us a couple of breaks. I remember going through 2 entire boxes of tissues. He answered our questions every time, even if we asked the same thing over and over. He had a power point presentation to help guide the discussion. He said that in the state of NC we could terminate a pregnancy as far as 20 weeks 6 days but no farther. I was already 18 1/2 so we didn't have much time to make a decision. After hours of conversation, he stated that if we wanted to do the surgery we were perfect candidates. But he would have to do an amniocentesis before the surgery to look for other abnormalities. We decided to do the amnio that day. Dr. Goodnight took us to another room where there was another ultrasound technician. He was so kind and understanding. He allowed us to see the baby in 3D and even gave us pictures, and a DVD of the ultrasound. We could see the baby moving and kicking. Yes, he was kicking! I got so excited, but Dr. Goodnight told us not to get excited because what he does in utero is not the same as being out of the womb. Dr. Goodnight performed the amnio himself. He informed me every step of the way. It hurt so bad, but I would gladly do it 100 times to trade it for the upcoming days. Dr. Goodnight and Erin want us to go to UNC Chapel Hill to talk to the 'team' of surgeons before we make a final decision. We left the office about 3:30. I called my youngest son, Alex, on the way home to inform him of the news. He was so quite on the phone.
This is so hard! How could this be? Why is this happening? What did I do wrong? Could I have changed this? Will our baby ever walk? Will he live? Will he live a normal life? Is this some kind of punishment? I want answers.... God, why?
No comments:
Post a Comment