My daughter, Rhiana, was born 11-30-98. She was so sweet and such a good child. My husband and I marveled at how good she was and how blessed we were to have a child that rarely fussed or cried. During the 4th month, we noticed that she was poor in her developmental milestones for gross motor skills. We just thought she was a slow learner and eventually she would be able to hold her head on her own and rollover. By the time she was 6 months of age, her pediatrician became very concerned and immediately sent us to see a neurologist.
The neurologist took one look at her and after a few tests for reflexes told us that she had Spinal Muscular Atrophy. We were shocked, but thought to ourselves, ďThatís okay if sheís disabled; weíll purchase a wheelchair and love her just the sameĒ. To our horror, the neurologist told us that this was a fatal disease and most children donít live beyond 2 years of age. He needed a blood test to confirm the diagnosis and then we were sent on our way. I donít even remember the drive home because that is the day our world came crumbling apart. The next two weeks I prayed and prayed that the blood test would come back negative and this doctor was making a terrible mistake. But it didnít, it came back positive.
We tried to make the best of it and took Rhiana everywhere. Amusement parks, the shore, you name it. She was such a happy baby, always with a smile on her face. Then one day, while drinking a bottle and eating her cereal, it started to come out of her nose. She then proceeded to turn white and stopped breathing. An ambulance was called and she was revived. Very, very, scary, but since she was fine after that, we were allowed to take her home.
The following week our town was having itís annual Halloween parade. We entered her in it on a small float as a Penn State cheerleader. She won first place. She was so happy every time we would show her that trophy. Then a couple of days after the parade things turned very ugly. Every time we would try to feed her, she would go into respiratory arrest. My husband and I had to revive her a few times. Finally, she was admitted to a local hospital and then had to be transferred to another facility out of town. We were not allowed in the ambulance with her and I was so scared that when we arrived, Rhiana would not be there. It was the longest ride of my life (besides the trip home, which Iíll get to.) But she was there and smiled at us when she saw us! She was so strong.
We stayed at the new hospital for about a week and learned there that Rhiana could no longer take anything by mouth again. She had to have an N-g tube placed in her in order to eat. She had to be suctioned frequently and she was placed on a bunch of different medications. We were allowed to take her home, but were warned that she only had a couple of weeks to months to live. The hospital got in touch with our local Hospice who would meet us at the house when we arrived home. So they sent us on our way with my husband driving and me in the backseat with the baby. We were so scared that she would stop breathing in the car since this was about an hour and a half ride, but we made it.
By the way, she stopped breathing at both of these hospitals, but she was revived.
The Hospice staff showed us how to work all the new medical equipment we now had and I took a leave from work to care for her. That was in early November. Our pediatrician worked closely with the Hospice staff and kept in constant contact with us. She would even come to the house to check on Rhiana so I wouldnít have to take her out in the cold to her office. Everyone was so wonderful and went beyond the call of duty in helping to care for Rhiana. My husband and I though, we were paranoid all the time that she would stop breathing again, and she did. The very next day that we brought her home. But, once again, we revived her.
To give you an idea of how scared we were; If I heard him call my name when I was downstairs, I would come running up the steps as fast as I could, as if I was running for the Olympics. I would be shaking and my heart would be racing so fast, but there would be nothing wrong. He just wanted to tell me something unrelated to Rhiana. We could not even do simple things like go to the store because we were so afraid that if we left the house, she would not be alive when we returned.
Rhiana was very happy when we brought her home though. She didnít seem to mind the tube she now had in her nose and she enjoyed watching PBS all morning. Her face would light up and her smile ear to ear every time she would watch the Teletubbies or Sesame Street. Her first birthday was November 30 and we held a small party for her in her honor. She received a ton of balloons, which are great for kids with SMA, because they are so weak and when they hold the balloon, they feel like they are accomplishing something.
Four days after her 1st birthday, Rhiana passed away. She woke me crying that morning and her breathing was very labored. She was very warm and had a high temperature. I knew something was terribly wrong and I think in my heart that I knew this was the end. God saw she had grown tired of fighting this terrible disease and called her home. I could not revive her that day and neither could the hospital. She passed away about 5:30 am and we held her in our arms until about 7:30 am until the funeral director arrived. I try not to think about that day or the following days that ensued for that matter. I miss her so much. We love you Rhiana banana.
PS- When Rhiana was 1-2 months old, she developed small hemangiomas (red dots) on her body. Being a new parent, I didnít know what they were and took her to Philadelphia Childrenís Hospital on a number of occasions to be evaluated. This was about a two and a half hour ride. It turned out that they were nothing to worry about. But the physician there noticed that her head was very flattened in the back. He recommended a molding helmet. So there I went to another hospital to have her fitted for that. It was like a football helmet that they suggested she wear around the clock. Her head would sweat so badly in it. I never put it on her again after that first day. How I wish that instead of trying to fix her flattened head, they would have tried to find the cause of her flattened head. (SMA- no movement) And how I wish I would have known more about SMA and put in the effort to go to the bigger hospitals with this disease as I had done with those hemangiomas.