Our Story: Samantha birth to diagnosis
After 5 years of dating and 9 years of marriage Jim and I decided it was time to start our family and by May 1999 we found out that I was pregnant. The year prior to getting pregnant I started taking prenatal vitamins and eating very healthy as we were determined to have a healthy pregnancy. Once we found out that I was pregnant I started walking 3 miles everyday in our very hilly neighborhood.
Throughout the pregnancy everybody insisted that I was carrying a boy, except for my mother who so desperately wanted a granddaughter. Jim and I had decided to let it be a surprise although we both were convinced it was a boy. My co-workers used to tease me because I worked everyday right up to the day I went into labor. It was 6:00 p.m. on Wednesday January 5, 2000 and I had just opened escrow with a client, I decided it was time to go home and get some rest. I arrived home at 7:00 p.m. and started feeling like I had a stomach ache so I called Jim and let him know that I was not feeling well and he decided he had better come home and check on me. My actual due date was the next day January 6, 2000 and he was concerned that I might be going into labor. By the time he arrived home I was definitely not feeling well so Jim decided that we should go to the hospital and have them take a look. I was sure that I had eaten something that did not agree with me earlier in the day and I did not want to go to the hospital but Jim insisted.
On the way to the hospital I had my first serious contraction and when we got to the hospital it was around midnight so we had to go through the emergency entrance. The nurse on duty asked us if I wanted a wheel chair and Jim proudly told her no, that I needed to walk to help the labor along. By the time we reached the maternity ward the nurse took one look at me and said I hope you wanted to go natural because you are just about ready to start pushing. I was 8 1/2 centimeters and moving extremely fast and by the time Jim called our parents, returned to the room I was ready to start pushing. Within 45 minutes we had our precious baby GIRL wow what a surprise that was after believing that she was a he all along.
Samantha Giovanna Dodaro was born January 6, 2000 at 1:15 am right on her due date. The doctor did all the normal testing and she scored a 8 1/2 on her apgar. A beautiful healthy daughter you have here the doctor told us and handed Samantha over to Jim and I. Due to some minor complications that I had we stayed in the hospital for three days but on the fourth day we arrived at our home with our beautiful daughter. The next 8 weeks we marveled over how beautiful she was and how strong she seemed to be. She was holding her head up by herself and just seemed to be very content.
It was her 2-month checkup that we showed some concern to the doctor that she did not seem to be moving as much as we thought she should be. The doctor told us that all babies are different and that we were just being over concerned first time parents. By twelve weeks the concern was growing, by then she seemed to not be holding her head up any longer and she was just very placid. We had a scheduled doctor appointment for her 4-month checkup and we decided that if at that appointment the doctor was not concerned then we would get a second opinion. Well to our surprise her doctor agreed with us and made a few phone calls to the specialist at Loma Linda Children's Hospital. After some lengthy conversations our doctor sent us over to the hospital to be checked in and run several test on Samantha. The neurologist came in and took a look at Samantha then looked over the couple of test they had ran and called us out of the room to let us know that he was 95 percent positive that our daughter had Spinal Muscular Atrophy.
Well our first response was is this very serious and what kind of treatment do we need to look at to get rid of it. He looked at us and explained that it was a genetic disease and that there was no treatment nor was there a cure. The next sentence was definitely the hardest blow and that was when he informed us that she probably had less than 2 years to live. We were devastated and speechless to say the least but one thing for sure we both knew that there must be some mistake and that he had to be wrong. Jim went to his office and got on his computer and immediately started researching the disease. We had never heard of the disease nor did we have any kind of neurological diseases that ran in either of our families.
By the time Jim returned to the hospital he was sure that there was some other explanation. Maybe it was the immunizations that we had given her at two months because that is when things started to change. The doctor released us the next day after running a genetic blood test to determine whether or not she had SMA. After many days of crying and asking why our baby we decided to start researching until we could find an answer or at least try to understand what SMA was. We discovered a wonderful web sit called Families of Spinal Muscular Atrophy and we learned so much about SMA that we were pretty certain that was what our Samantha had.
The next three weeks were the longest three weeks of our lives. The day finally came June 14, 2000 to meet with the doctor and go over the blood test results and find out if Samantha had SMA or not. By the time we arrived at the doctors office we were holding out on that bit of hope that maybe there was a mistake but when the doctor came in and told us the test was positive we knew there was no mistake. As the doctor explained that there was no treatment nor was there a cure we knew at that moment that we would be faced with the biggest challenge of our lives. He explained to us that it was time to take our daughter home and enjoy everyday that we had with her because she would probably not live to see her 2nd birthday. We very politely smiled and said this is our daughter you are talking about and we will fight every single day of her life to see her out live her prognosis. When we got home that day we started taking turns on the computer researching special diets, current drug trials and every other thing that we thought would help our little girl grow up to be a big girl.