Tuesday, January 01, 2008

The Specialist- Faith's Story Part II

We went to see the Specialist on March 26th. We had to wait 2 weeks from the initial call from Dr Smithton becuase the specialist didnt have any available appointments. I even called around to several other specialists to see if ANYONE could fit us in. After what seemed like an eternity, we went in on March 26th. Little would I know that this short 2 week wait would seem so very little compared to the waiting ahead. Cliff's parents came with us to the first appointment with the specialist and this started a trend. From this point on they were by our sides and at every appointment for the rest of the baby's life. We started the appointment with Dr. Elimian by having the best ultrasound ever. The technician was highly skilled and looked at every part of the baby. He confirmed that we were having a girl( although he also said it was hard to tell) and he showed us the giant "O"( this is what we began to refer to the Omphalocele as) Dr Elimian strongly encouraged an amnio becuase there was a 33% chance that our baby girl had a chromosome disorder. He did it right there on the the spot and they inserted a giant needle into my belly while he watched on ultrasound to make sure he didnt hit the baby. She did a funny thing as we watched the ultrasound. She swam over to where the needle had been inserted and put her hand up to the hole to feel for what had come in. I knew she was a smart little girl from the very start!Dr Elimian scheduled us for a follow up the day after Easter- 2 weeks away. We were told the amnio results could take 2 weeks to come back or they could be back sooner but we would go over them at the next appt. We went home with our hopes high and started another wait. I researched Omphalocele's as much as I could to prepare for the next visit and to decide on treatment for our baby girl. I learned that if she had chromosome problems she could have a severe type of trisomy such as trisomy 18 or 13. The majority of sites I visited assured that a baby that had this would be born severely mentally retarded and severely physically disabled. The sites said the baby would most likely die within a year. During this time Cliff asked if we could name our little girl Faith. "WE will need great faith to get through this" He said. I agreed. Our baby had a name.On the Friday before Easter I was off work. Ethan was staying with Mimi and Papa and I was beside myself wondering about Faith. It had been almost 2 weeks and the results werent in. I decided to call the genetics lab. They had to look around for her results and said they would call back. They called back a little while later. They told me Faith did test positive for a Trisomy. 13 but the cells were mosaic. Again I was in shock and didnt know what that meant. I wrote it all down. The genetic counselor asked what I was thinking? "How are you feeling? What are your questions" and talked in a very soothing and soft voice. I just repeated what he had told me about the test results and got off the phone. I got online to look up Mosaic Trisomy 13. I was shocked. I called Cliff crying at work and asked him to come home. He asked me why and I told him the initial results. He drove home in a wild state I am certain. We began to research Faith's condition. It was scary. As sites predicted mental retardation, possible miscarraige at anytime. Less than a month of life was projected outside the womb. We found one site that gave a ray of hope. www.livingwithtrisomy13.org There were children that were living with Trisomy 13. Children that went to school. Some children that danced and played sports. We printed off everything we had and decided to go home to Cliff's parents for Easter. We prepared as much data as we could to share with them. The drive to Elgin was long. The weekend was long. Everyone tried to remain in high spirits but it was difficult. I had to go off to myself several times to cry. I didnt know how we could make it. I didnt know how we could do it. I began to pray earnestly. Faith was now kicking and moving and with each Kick I held her so tightly in my stomach. "stay strong" I whispered. "I love you!"On Monday we went to the specialist with Cliff's parents. He went over the results with us and advised that we could still terminate the pregnancy. He said that due to her condition she was not going to be viable with life. I pulled out the papers from the website. I told him she could live. This was the closest I came to having an outright arguement with a medical professional. He left to have the nurse check my stats and came back in. He said he just wanted to be sure that we wanted to continue with the pregnancy considering the odds. That after 24 weeks we couldnt change our mind. Cliff and I reassured him that we would not be changing our minds. We will carry her as long as God allows!

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