We stayed at the hospital for 4 days while they did testing. On the day of discharge Dr. Novak told us to take Cathryn home and make her happy. You see at the time very little was known about SMA. If a child was diagnosed from birth to 3 months their life expectancy was 2 years. Cathryn had no idea she was ill. She progressively lost all voluntary muscle movement but in God's infinite wisdom the child is bright, alert with no mental issues. Our insurance was awful so I learned how to care for her. Turning and positioning, placing the nasal feeding tube, suctioning, chest PT and so much more. Kerri and Dougie only knew that their sister needed mommy, a lot. Cathryn remained happy and loved all the attention. We went to "healing mass" where one sermon was about bringing people back to the church. The priest said if you brought only 1 person back it was a miracle. I looked around the church and there were over 50 people that my husband and I knew.
Cathryn developed aspiration pnemonia on/about July 24 1992. We stayed in the hospital, Huntington Hospital, where the care was exceptional. Cathryn became unreponsive on 8/12 but on Friday she woke up. She smiled, laughed. I told our family and friends to all come down during the day to see her. On Saturday she was unresponsive again. In the middle of the night/morning Monday I was sitting outside the hospital and asked Jesus to not let her suffer to let her pass quietly. At 6 am Cathryn had a 106 degree fever. Her respirations were 60 per minute with a 220 heart rate. And then the heart rate started slowing as did her breathing. I was holding her with my husband next to me, I gave her permission to go. I know that sounds silly but she opened her eyes and looked at my husband and then me smiling. She closed her eyes and was gone.
Two weeks later at the advice of Dr. Kurfist, the nurses and my therapist, I went to the local community college to sign up for nursing school. I wanted to give back and help others. Of course it was the last day of registration so the only class available was an English class (I had never finished college), but I had written on the form I needed Anatomy. As I signed up for the English class the registrar asked if I still wanted to take the Anatomy class. I said I did but it was full. She told me the woman that had been in front of me just dropped it so I could take it. Thus I began my education.
I honestly felt Cathryn was/is looking out for me. I graduated in 1994 with a general studies degree and in 1996 my registered nursing degree. A side note - My son was having a tough time in college, he had wanted to go into the marines out of high school but the family discouraged it because he was so bright. Doug just hated school though. He went to the cemetery to talk to his grandfather who had been a marine and then to ask Cathryn what to do. When he left the cemetery there was a large SUV in front of him with stickers for the marines. He tried to pass the SUV 3 times before he stopped the car in the middle of the road, threw up his hands and said I got the message. He turned around and went to the recruiter’s office. He came home and told me the story, in tears. I'm proud to say he is a lance corporal in the marines stationed in Hawaii. Right now he is in Japan. My daughter KerriAnne just got married and is doing great.
Spinal Muscular Atrophy is genetic autosomal recessive meaning both parents must carry the gene for the child to have the disease. 20 years have gone by but I remember it like it was yesterday. A test is available to identify carriers and my daughter is a carrier her husband is not (thank God). My youngest brother had himself tested before having children and he is a carrier, his wife is not. My other 2 brothers have 2 girls each who are healthy. No test was available when they began having children. SMA is the number 1 killer of infants. Some SIDs deaths have been linked to it. I live in New York and all pregnant women are tested and if you go before getting pregnant they do the test. All infants born are tested. There is no cure but some treatments and therapies can make the child's life more comfortable even extending their lives a short time.
Well Cathryn is my angel! (thank you for letting me share).
Inspiration for Story: My Daughter.
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