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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 Carnitor® 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
josey9631639@yahoo.com
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