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March 29, 2001 was the happiest day of my life.
Not only did we have a wonderful little boy, Tommy, but early that
Thursday morning I gave birth to a beautiful little girl, Nora.
She was born two hours after her due date! All of the women in my
family were born at the end of March, so Nora's birthday being on
the 29th made it extra special. My husband, Jay, and I were ecstatic.
My pregnancy had been easy. We did have an ultra sound and when
we found out that we were going to have a girl, we both were so
happy that we cried! Nora kicked so hard during the ultra sound,
that the lady doing the procedure told me "Be ready and put your
running shoes on for this one!" I also had to go to have a non-stress
test done a few times, because my doctor thought that Nora might
be a little bit too small for her gestational age. When Nora was
born, she was 6lb and 5oz, so she wasn't exactly a big baby, but
then again both of our families are on the small side. All that
mattered was that Nora was as healthy as could be! She right
away got an Apgar score of 9!
We could not have been any happier. Everyone kept telling us "Now
you've got a perfect family, a boy and a girl." We felt so blessed!
Tommy adored his little sister and Nora was crazy about Tommy.
Soon Tommy learned that when he'd do something goofy in front of
Nora, she'd laugh out loud. It was so much fun watching the two
of them "play" together. I stayed home with our children and life
could not have been better. Nora was an extremely easy baby. Immediately
she started nursing really well. She hardly ever cried and was very
happy and content. She started smiling early on and she shared her
special smile with everyone who looked at her. Nora slept well and
ate well. She would never cry when she woke up from her naps, she'd
just make cooing sounds and when I'd go to pick her up, she'd smile
to me. She loved sitting in her little swing and watching everything
around her. When you held her, she liked sitting with her back against
you, so that she could see everything that was going on. She was
very alert. She loved being sung to...I had a special song that
I used to sing to her every day and whenever I'd just sing the first
few notes, she'd give me a great big smile. When Jay was not
working, he would help me with everything. He'd bathe Nora (she
loved baths), change her diapers, bring her to me when I'd nurse
her, etc. He loved his little girl.
Nora's checkups went well. Even though she was small when she was
born, she quickly became 50th percentile in height and weight. The
only thing that bothered me was that sometimes when I'd feed her,
she'd have projectile vomiting. I often wondered about this.
I read about it in a couple of books, and I even asked our pediatrician
about it. But the fact is, that MANY babies do throw up. And it
seemed that when I'd burp her more, she wouldn't throw up so much.
And since she was gaining weight so well, nobody was concerned
about it.
I never left Nora and Tommy for longer than an hour or two. My sister
came to see them almost every day. Tommy and Nora love Tuula. I
knew that the day would come that I'd have to go back to work, but
I tried not to think about that. I worked part time, only six days
a month, but my work would take me out of state twice a month, three
days at a time.
On August 7th I was supposed to go to work for just a day of training.
I did NOT want to leave Nora and Tommy. But I kept telling
myself "You won't even be gone overnight. Before you know it, you'll
be back home again." My big fear was that Nora would not take a
bottle because I had been nursing her exclusively. We went through
the same with Tommy. On that early morning I nursed Nora, kissed
her and Tommy good-bye, told them both that I loved them, and headed
to the airport. When I got there I found out that my flight to my
destination was canceled. I turned around and came back home. I
was only gone for about four hours, but that morning Nora had cried
hard and refused to take a bottle from Jay. When I returned, everything
was back to normal.
The next day Nora seemed to be a little quieter than normal. I also
remember that she wasn't eating as well as usual. When I nursed
her, she'd throw up and when I'd try to nurse her again, she'd just
look at me and smile and turn her face away. I figured that she
got enough food and was maybe throwing up the excess. She was otherwise
in a good mood and happy. Then came the next day...
Once again, I had to get up at 3am and try to attend my one-day
of training. I had a very hard time leaving that morning. I really
didn't want to go. I nursed Nora and told her how much I loved her.
Then I gave Tommy a kiss and whispered in his ear "I love you and
I'll be back tonight..." Then, for some reason, I had to go back
to Nora's room and hold her again and kiss her and tell her again
how much I loved her. Then I said a prayer and asked God to take
good care of my children while I was gone, then I cried a little.
I just had a terrible time leaving. But then I told myself that
I'd have two more months off after that day, and I headed out the
door.
My training went well. At home Jay took care of Nora and Tommy in
the morning and later when he had to go to work, my sister took
over. When Nora got up in the morning, Jay picked her up from her
crib and placed her on our bed to change her diaper. He went to
turn the water on to wash her a little bit, but when he went to
pick Nora up, she had fallen back to sleep on our bed. Jay let her
sleep on the bed and went back to bed himself.
After my training was over, I called my sister to tell her that
I was on my way home and to check how everything was going. My sister
told me that Nora had taken the bottle and that things could not
be better. I had told the other women in my training class how concerned
I was that Nora would not take the bottle, but after talking to
my sister, I told them that I didn't have to worry any more, that
Nora had taken the bottle from my sister.
When I got to the terminal to take my flight home, I called my sister
again. This time she told me that Nora didn't seem to be her happy
self. Tuula said that she just wasn't smiling like usual. Maybe
it's mother's instinct, but I got a terrible feeling that something
awful was going to happen. We kept thinking that maybe Nora
just missed me, but we then decided that Tuula would call our pediatrician.
I got on my flight, but then found out that the flight was canceled
because of a mechanical problem and it would take them an hour and
a half to get another airplane! I was so upset! I called my sister
again, and she told me that she was waiting for the doctor on call
to call her back. By the time I boarded the new plane again, she
still hadn't heard from the doctor...We found out later that the
"operator" had given the doctor on call a wrong number!
As soon as I got off the airplane, I called home again. There was
no answer. I was very upset and knew that something had happened.
When I reached my car, Jay called me from the hospital, and told
me that they had taken Nora to emergency. Upon arriving at the
hospital, the emergency room doctor had asked if my sister was sure
that something was wrong with Nora, because she looked so well.
Suddenly Nora then became unresponsive. They rushed her to
a treatment room and began taking her vitals. They could not figure
out what was wrong. They thought that a CT might reveal what Nora's
problem was. While all of this was going on, I was driving as fast
as I could, trying to get to the hospital. It seemed like the
longest drive of my life. All I could do is cry and pray...
Prior to the CT, Nora went into cardiac arrest. They attempted
to resuscitate her for almost an hour. They were trying everything
they could, but nothing worked.
I arrived at the hospital and was met by our Pediatrician. He told
me "I'm sorry, but Nora didn't make it." My world collapsed...Leaving
home that morning, I never would have thought that Nora wouldn't
be there when I returned and that I'd never get to hold my baby
alive again.
We couldn't understand what had happened. We agreed to an autopsy.
Our Pathologist was very thorough and with our connection to the
Mayo Clinic, we quickly found out that Nora had died from a Fatty
Acid Oxidation Deficiency ~ LCHAD specifically. We had never
even heard of such a thing and had no idea what was ahead of us...
Our world was crushed and to add to the devastation we learned
that Nora could have been screened for her disorder, and her prognosis
would have been excellent!
Now every day we go to the cemetery to visit Nora's grave. We
miss her more than we can say. It is so sad to see Tommy without
his little sister. He talks about Nora a lot and we know that he
misses her too. Every night I say a prayer in front of Nora's picture
and tell her that I love her. In bed every night we cry ourselves
to sleep.
Now we are very busy advocating Newborn Screening to other parents
and not a day goes by that we don't ask ourselves "Why were we not
informed about the screening?" If we had been, we know that
our little angel would still be with us.
Sirpa and Jay Waananen
JMWaananen@aol.com
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