Josey’s Story ~ MCAD, misdiagnosed as SIDS

I want to thank you for sending me the Newsletters. Before I got those in the mail my husband, Steve, and I thought we were the only ones going through this. We couldn’t believe how many other families have gone through exactly what we have. The day we got the newsletters we both sat down and started reading the stories of other families. We were told this disorder was rare, so we were in shock to hear just how many families have lost children or have children living with a metabolic disorder. All the stories really got to our hearts. We know the pain you all felt. There is no greater pain a parent can feel than the pain that comes from losing a child. I am so sorry it took me so long to send my story to you. This was a very difficult thing for me to do. Well here it goes.

Josey Deanna Rowland was born on September 30, 1996. She weighed 8lbs., 4 oz. and was announced to be a healthy baby girl. Steve and I were so happy. We already had a two-year-old son, Devin, and now a beautiful baby girl. We felt like the two luckiest people on earth. Our dream was to have a boy and a girl. Now our family was complete. Josey was an angel sent from above. She was always smiling and making everyone around her smile also. Even when Josey was sick she still would be happy. The first year of Josey’s life she got sick pretty often. She was hospitalized four times before her first birthday. And each time she always had bronchial pneumonia and would be in the hospital for at least five days each time. We were concerned how often she got sick but the doctors told us she just got sick easily.

Well, when Josey turned ten-months-old she was put in the hospital for the fourth time, and still the doctors did not seem to be concerned on how often she got sick with pneumonia. We were at the point of wanting to get a second opinion, but when Josey got out of the hospital that time she never got pneumonia again. She never was hospitalized again after that. We were no longer concerned anything was wrong with her. Josey was happy all the time. She loved playing with her big brother, what time she was not under me. She definitely was a mama’s girl. And because of that she never stayed away from home.

Except for on October 27, 1998. That day Steve and I were having some personal problems and I decided to stay with my parents for a couple of days. Later that night, I decided to go home and work things out with my husband. My sister told me to go on home and she would keep the kids so we could talk. Before I left I gave Devin and Josey a bath, and fed them supper. Josey was in such a good mood and did not let on that anything was wrong with her. She had a little cough and that was it. I remember before I left that she had one diarrhea diaper, but I thought something she ate, may have torn her stomach up. When I left Josey that night she was fine. She was happy and playing around like she always does. When I left that night I had no clue that would be the last time I would see my little girl alive. I did not even tell her bye or I love her that night before I left, because I knew she would cry to come with me. I never could leave her crying. I regret so much not telling her I loved her before I left. I thought I could make up for it the next time I saw her, but how was I to know something so tragic was going to happen to me ~ something that would change my life forever.

Well it is hard for me to go into exact details on what happened the night Josey died, because I was not with her. All I know is what my parents and sister told me. That morning when my husband left for work his mother was supposed to go and pick up the kids and bring them to me. I remember getting up that morning in such a good mood. Steve and I worked out our problems, and I couldn’t wait for the kids to get home. I will never forget that morning. I heard a car coming up the drive and I assumed it was my mother-in-law bringing the kids homes, but when I looked out the window and saw that it was the secretary that worked with my husband my heart dropped. I knew right then something was wrong. She got out of her truck and she was crying, and all she would tell me was to get in the truck. The first thing that came to my mind was my husband got into a car accident. Not once did it run through my mind that it was one of my children. I was crying so bad that I could hardly talk. I tried to get her to tell me if Steve was all right. I just knew he was killed in an accident. She looked at me with so much pain in her eyes and said, “Janice, I was told to get you and Steve to the hospital as fast as I could.” When I heard her say you and Steve, I really broke down, I knew then that it was not Steve I was going to the hospital to see. I felt sick to my stomach by this point. I knew then it was one of my children. I just didn’t know which one. That five-minute drive to the hospital seemed like an hour. All I could say the rest of the way there was “God, please let my baby be all right. Which ever one it is, please let them be all right.”

There was so much going through my mind at that time. Not once did I imagine pulling up at that hospital and seeing what I saw. When we pulled in the driveway of the hospital I saw my dad, and when I saw his face I knew then it was bad. I started screaming as soon as I got out of that truck, and all my daddy could say to me was “I am sorry, Jancie. I’m sorry.” I ran in the hospital and saw it was Josey lying in that bed. I practically threw myself on Josey, and I told her that she had to be all right. Still not knowing that she was already gone I asked the doctors why were they just standing around and doing nothing, and I told them to help her. The doctor then told me they were sorry but they did all that they could do for her. I assumed that they meant that it was up to God on whether or not she got better. Not one time did her being dead cross my mind. I just hugged her and kept telling her that she had to be okay, because I couldn’t go on without her. At this point Steve realized I was thinking she was still alive. I will never forget when he turned me around and said to me, “Janice, she is gone.” I went hysterical and it took almost everyone there to hold me down. I just couldn’t believe what I was hearing. I didn’t want to believe what I was hearing. I picked her up and she was so fragile. I called her name and she didn’t respond. At that moment I knew she was gone. I can’t begin to tell you what I was thinking and how I felt at that very moment. I honestly felt like my life was over. I felt like my life couldn’t go on without her.

I didn’t understand what could have possibly happened to her. The night before she was fine and now my precious baby girl was gone. I questioned the doctors and all they could tell me that she probably died from SIDS and we wouldn’t know for sure until the autopsy report came back. I remember when they took her away from me that day. A part of me died at that moment. I couldn’t believe this was happening to us. We left the hospital in total shock. I then questioned my parents on what happened. They began telling me everything she did from the time she went to bed and the time she woke up the next morning. My mom said that Josey woke up around 4 am coughing. And then she threw up. She thought she threw up because she was coughing. She said when she cleaned her up Josey went right back to sleep. Around five that morning my mom left for work. Daddy said she woke up around six moaning and shaking a little. He thought she was cold and covered her up. He said that when she moaned he would rub her face and she would go right back to sleep. He said around six-thirty or so she woke up and was crying a little, so he got up with her and sat at the kitchen table and gave her cup to her and he said that she acted like she couldn’t hold her eyes open so he took her back to bed. Thinking that she was only sleepy. He said at seven thirty a policeman came to the house to get him because my brother got into a bicycle accident on his way to school, so he left Josey with my sister until she had to go to work and my grandmother was to look after her until my dad got back.

Well my sister said she left for work around eight-thirty and she looked in on her and she was still asleep. She said she didn’t go up to her because she was scared she would wake her and she would cry to go with her to work. She said before she left she told my grandmother that she was still asleep. Well a few minutes after my sister left my mother-in-law came to pick them up to bring them to me. She told me that she went to get Josey out of the bed, and when she walked in she called her name and she did not respond so she went to pick her up and she knew something was wrong. She said she then took her to the emergency room.

That was everything I was told. My daddy blames himself for not knowing that something was wrong with her. It was hard hearing all that. I, too, felt that if she would have been with me I would have known that something wasn’t right when she was moaning and groaning in her sleep. I feel like I could have saved her if she was at home with me. I don’t blame my dad, he had no idea what she was doing was not normal. It was hard on all of us. With the help of family and friends we made it through the funeral.

It was three weeks later when we got the call and was told that Josey died from viral pneumonia in the background of MCAD. They couldn’t tell us much, because no one knew anything about it. All they told us was it made the blood sugar drop rapidly. They set us up an appointment with a counselor to explain to us exactly what MCAD was. When we learned that this type of disease was treatable if known about, we were so angry. We were upset that these tests were not performed on babies at birth. We also learned that our older son could also be affected. We had him tested and found out that he was a carrier and not affected. We thank God for that.

Well two and a half months after Josey died, I found out that I was pregnant. I was in shock, and we were so scared that this child would also be born with MCAD. On October 5, 1999, I had a 7lb lloz baby boy. Drake seemed to be healthy, but the test was done at birth and showed that he, too, was affected with MCAD. We were grateful to know about it this time, but we were scared to death. We didn’t know what to expect. We had to take him to Atlanta at Emory University, and there we learned how simple the treatment is. He was on similac with iron, and we had to add polycose, provimin, and CarnitorĀ® to his formula. We learned that he had to be on a certain diet and as long as we did his diet right and not let him fast for a long period of time he would be fine. Well Drake is now one-year-old and I am happy to say that so far he has been fine. He has been hospitalized twice, but nothing serious. He had a cold and they put him in the hospital to watch over him. He is energetic and happy all the time ~ just like his sister.

Since Josey’s death I have wanted to do something to make others aware of these disorders and to get the states to allow these screenings on babies at birth. I want you all to know that I will do my part to help Save Babies Through Screening (formerly Tyler for Life Foundation) to raise the funds to help make this happen. I am sorry to hear about all of you that have experienced what I have, and I want you to know that you all are in my prayers. I believe that all of our children are in heaven watching over us and helping us get through everyday. I do believe that if we all work together we can make this happen. Our children will live forever in our hearts. God bless all of you.

Janice Rowland