Isabel has been through so much in her short life. She is such an example to me of strength, love, and patience. I feel truly blessed to be her mother and to have her in my life, she has such a special and sweet spirit.
Isabel was born on December 26th, 2005. She was delivered via cesarean section due to her fluctuating heartrate after a normal pregnancy. She was born at forty weeks, to the day. Isabel was a big (8lb, 20 5/8 in long), healthy baby and had no complications or health concerns after birth. We took her home and began enjoying life with our new baby.
I first noticed that Isabel didn’t seem to be as strong as she should be when I went to work in the infant room at a day care center. Isabel was about two and a half months old. I took care of a little boy who was born just days before Isabel. I was amazed that he could stand with all of his weight on his legs while I held onto his arms. My Isabel would just let her legs collapse underneath her. Being a first time mother, I worried but thought that all babies just developed differently. Isabel had a check-up with her pediatrician a few days later, who also noticed Isabel’s lack of muscle tone in her legs and inability to lift her head. Isabel went in for an MRI of her head, neck, and spine the following day. Everything came back clean. She also had an appointment with a neurologist who seemed to suspect that Isabel had Spinal Muscular Atrophy the first time he saw her. He made her an appointment with another neurologist at a medical center that would be able to perform the DNA test that would confirm or rule out SMA.
I had never heard of SMA before. After meeting with the two neurologists, one of whom believed there was only a five percent chance that Isabel did not have SMA, I began researching the disease. I read that the disease was genetic coming from both parents, that there was currently no treatment, and that fifty percent of children diagnosed with SMA type 1 (the type Isabel would have due to her age) will die before their second birthday. I decided not to read any more about SMA until I knew the results. After four weeks, we received a call from Isabel’s pediatrician that they had received the results of the DNA test, which were positive.
It was hard to believe that my little girl really had this awful disease. She looked healthy, besides not being able to move much. She was starting to get cute, chubby cheeks and she was so happy. I don’t know how many times I thought that maybe the test was wrong. Our life continued on relatively unchanged. I stopped working to stay home with Isabel. We did everything we would’ve done with her if she didn’t have this disease. We took her on walks, played with her, took her to the circus, gave her baths, fed her bottles, and put her to bed. She even started to eat cereal and seemed to be holding her head up better.
In May of 2006 Isabel developed bronchiolitis. We started giving her breathing treatments and she seemed to be doing much better. Then she started coughing again and wouldn’t sleep at night, which was not like her. She didn’t want to eat anything. We took Isabel to see her pediatrician and they sent us to the hospital. She was admitted for pneumonia on May 25. Isabel was put on antibiotics and was recovering from pneumonia but she still wasn’t able to eat. After losing two pounds she was finally given a feeding tube through her nose. We continued to try to give Isabel a bottle. Her doctors decided that because of the risk of aspiration we should stop trying.
Isabel was discharged from the hospital on June 1, considerably weaker than she had been before she developed pneumonia. She could no longer support her head at all. She was still able to take her pacifier, move her arms from the elbow down, and move her feet. Only a few things changed in the way we cared for Isabel after that first stay in the hospital. She was only fed through her feeding tube, which had to be changed once a week. That was the hardest thing to get used, sliding a tube down Isabel’s nose all the way to her stomach. She also had a suction machine that we used to suction secretions out of her throat when she seemed to be having a hard time breathing. We also gave her breathing treatments with a nebulizer and used CPT to help clear her lungs. Even with the feeding tube she was able to go swimming for the first time, and I was still able to hold her easily and carry her with me wherever I went.
In this picture you can see her feeding tube in hernose and how her chest caves in because her muscles
are not strong enough to fill her lungs completely.
