My Story

Finding out that I was pregnant with Violet was a surprise. We were not planning another child, as our first daughter together was just a year old, and my husband has a then 12 yr old daughter. We of course were still extremely happy! Violet was due to arrive the day before Halloween, 2010. My water broke almost a week early and Violet joined us via C-section on October 24, 2011 at 4:03pm. She was a healthy 8lbs 9oz and 20inches. Violet looked just like her big sister Ember, and was almost exactly the same size. We took her home 3 days later. From the moment we brought her home Violet cried. She cried all day and all night. She went to her pediatricians’ office several times, they said she had colic and changed her formula a couple times. In fact at one time a pediatrician told us to “put on Mozart and turn down the lights.” Nothing seemed to help, so on Friday morning, November 19th, my husband brought her back to the doctors hoping for some answers. The doctor who saw Violet was pleased with her weight gain, up to 10lbs 3oz, and once again changed her formula saying it was just colic. When my husband was leaving the office, the doctor noticed when he put Violets coat on that her arm fell limp. She then asked if Violet was always this limp. Truth be told we were so tired we hadn’t really noticed she was weak until the doctor mentioned it. My husband called me and asked me if I had noticed it and I had noticed the previous night that her cry seemed very weak, but I figured that was because she had to be so exhausted from crying. The doctor then decided that Violet needed blood work, and scheduled an appointment for that afternoon with a Neurologist. Violets blood work came back just fine. So… I thought that everything was going to be ok. Then when my husband took Violet to the Neurologist appointment, he sent me a text message not even 15 minutes into the appointment telling me they were going to admit her to the hospital. At that very moment my heart sank and I knew, I just knew, it wasn’t good. I was home with my 23 mo old, and we both had fevers, so I held out hope that this was just some virus. The hospital would not let me come in because I had a fever, so I stayed home feeling very helpless. The Neurologist called me to explain she had an idea of what condition Violet had; she said it was either Guillain Barre Syndrome, Botulism, or a genetic disorder. I asked her what the outcome would be, and she said none of them would be good. A specialist preformed a test named EMG and about 2 hours later my husband called me and said they wanted me there right away. I arrived at the hospital to get the news that Violet was diagnosed with Spinal Muscular Atrophy, Type 1. Basically they told us she had 6 to 12 months to live; there was no cure, no treatment. They went over the options for us, ventilator, bi-pap, G tube, all of this was foreign to us, and no matter what we decided to do she would not survive. We decided immediately that we would not be doing anything invasive. We asked for Hospice, and wanted to take Violet home as soon as possible, we had to stay overnight for observation. No one we knew even heard of this disorder. I did as much research as I could that night in the hospital. Nothing I read was good. We left the hospital on Saturday morning feeling confused, lost, scared, and sad. We knew what the end result would be. But what would the journey be like for Violet, for us? And what would we tell Ember. Then we met the most wonderful person, Violets hospice nurse, Jen. From our first meeting I knew we were in great hands. Jen had never had a patient with SMA, but she did have lots of experience with kids. I also looked at the paperwork the nurses gave me at the hospital and decided to place a call to Families of SMA, the Massachusetts chapter. I received a call back from another mom who had lost her son to SMA in 2002. Laurie became a great support and source of information for us. I learned more from her than what any doctor had told us. In the days to follow we received oxygen, a suction machine, morphine, and a lot of information. Violet was still holding her own, but we would need these things in time. We now definitely noticed just how weak Violet really was. She had basically no muscle in any of her extremities, and what we couldn’t see was that she didn’t have any muscle inside. Violet would breathe from her belly, never her chest, and she worked hard for those breaths. She could hold your finger if you put it in her hand, but never lifted her arms or legs. The hardest thing was that she always cried, and I was the only one she would let hold her. She was also beginning to smile and laugh, which were bittersweet. Violet would continue to smile until the day before she passed. We skipped Thanksgiving, just being newly diagnosed; it was too hard to face many people. The first week of December came, and Violets crying seemed to increase, and I really believed she was having reflux. Jen, our nurse got Violet prescribed Zantac, and that seemed to help somewhat. We also got her on a different formula, and I learned more about the different nutritional needs of SMA children, from another SMA mom, Liz. Even with the formula and the reflux medicine Violet was still not happy. One night, out of desperation I googled SMA and reflux. I found an article about motility issues in SMA children and some medications that might be needed. My nurse got us a medication to help with that. Finally Violet was happy! Then Laurie put me in contact with another mom, with a son, Coby, a month older than Violet who was diagnosed with SMA Type 1 also. Lori, Cobys mom and I became friends fast. We have a lot in common, and we have been support for each other in so many ways. Coby continues his fight today, and I pray for them, and talk to Lori daily. Coby, you see, is Violets boyfriend, and we know that someday they will be together in heaven. We decided to have a big family Christmas. Since this was going to be Violets only Christmas, we wanted her to celebrate it, even though she was only 2mos old. We had about 15 people coming over on Christmas Eve, and Violet decided that she was not going to have a good day. She began crying, and when Violet cried she turned blue from lack of oxygen. Christmas Eve was the very first time we had to give her morphine. It was one of the hardest things I had to do in my life. Thank goodness my husband was stronger than me and knew it was best. She was comfortable then, and slept peacefully, probably for the first time ever. After Christmas, Morphine became just another daily staple in Violets life. Our mission was to keep her pain free, and comfortable. As the new year came, we knew Violet was having trouble swallowing, so, on New Years Day, Jen placed a NG tube so we could continue to feed Violet. We also began using another medication, Ativan, to help with her comfort. We got used to feeding with the NG tube, but we could tell Violet was getting weaker. On January 24, 2011, at exactly 3 months old Violet passed away peacefully in my arms. My husband and I believe that we did the best thing for our daughter. We believe we kept her comfortable and pain free, until it was her time to leave this Earth. I do not have any regrets in keeping her home, and taking care of her. I truly feel blessed to have had such a wonderful Hospice nurse, and now friend in Jen. The people I have met in the SMA community are amazing. Someone said to me that the SMA family “is the nicest group of people you wish you never had to meet”, and that is the best way to describe it. I know my angel is watching over me, and her big sister Ember whom she just adored. Ember has told me she has Violet “in her hands”, and that Violet is “a happy girl now”. I think maybe Violet is a lot closer than we think.