Ann Story part #2

[Guest guest]

she had one, and she appeared to " look " healthy, which was a joke in itself

because she was suffering from failure to thrive, and decided that I must be

the cause. This " doctor " had me investigated for Munchausen by Proxy. This had

to be the worst experience of my life! I was being accused of purposefully

hurting my child when all I had done for the past 8 months, was work myself to

death to make sure she had the best care she could get, and try to find out what

was wrong with her. I was tricked out of her room. They told me they needed

me to come and sign a paper, and a nurse came in and took her from the room

and away. I was then escorted to a room and was grilled over and over about

each and every time I had had to call the paramedics and or do CPR on her, all

of

her hospital stays, and it went on and on. The stress I was put under was

incredible, I was treated like a criminal. My husband was allowed to be with

her, but I was not allowed to be near her. This arrogant Intern " doctor " would

not back down for anything and it took not only my current pediatrician, who

had been her pediatrician from birth, but the Geneticist at Children's Los

Angeles to clear up the accusations. Even though it had been proven that I had

been falsely accused, by law, I had no recourse on the doctor who falsely

accused

me. They do not have to have evidence to accuse, just a suspicion, nor was I

ever so much as offered an apology by the doctor or the hospital. I have been

left with scars still to this day from this mans carelessness and flat

arrogance. I was afraid to take her to get help when she needed it for fear of

another false accusation, and waited far longer than I should have or would have

waited prior to the accusations. To this day I am very sensitive about doctors

who don't know anything in ER rooms who ask questions. I always wonder what

they may be thinking and is it going to happen again. I carried a letter with

me everywhere I went from the geneticist explaining her illness after that, and

still do to this day.

At nine months, the geneticists doctor figured out that she had what he

diagnosed her with at that time to be MCAD-and then was changed to Glutaric

Academia Type II at 15 months or so. Both Mitochondrial Diagnosis, the rare

disease he had told us he feared she had. I will never forget the phone call we

got telling us the results were in and the doctor wanted to speak to us face to

face. You know when you hear that, that nothing good is going to be said.

Even though they gave her the diagnosis, she had several symptoms that fit other

things as well. She had " Like " symptoms of several things. I remember

carrying her from the doctors office completely stunned, scared, angry and just

in

flat shock! How could our beautiful little girl be so ill? It just didn't

make any sense to us at all at that time. I went home and began researching

absolutely everything I could find, which was not much on the 2 diagnosis'. In

between the tears, I had overwhelming bouts of fear and anger. By the time she

was a little over a year old we were forced to file a medical bankruptcy as we

were in hock over $250,000 and we " had " medical insurance!

About this time I became pregnant with twin boys which at just a little

over 5 months I miscarried. They were severely deformed and I was told were

not viable even if I had carried them to term. We were counseled that it was a

one in four possibility of having another child with the problems that our

daughter had and the twin boys were probably a coincidence of circumstances, and

there was no reason to not try again. However, it was in their experience that

couples facing what we were facing almost always divorce within 2 years of

diagnosis due to the demanding life style and stress and financial burden of

caring for an ill child. We decided that was not going to be us, although

through the years of such high stress, our marriage has been put to the test for

sure! We are about to celebrate or 15th wedding anniversary.

Our daughter continued to be in and out of the hospital, and I became

pregnant again. I was scared to death! My pregnancy was different then the

one with my daughter, although I still experienced similar issues, they didn't

seem to be as severe. At 33 weeks our son was delivered via C-Section, I was

having horrible blood pressure problems and had passed out in the OBGYN's

office at my check up, I was sent straight to the hospital and my husband was

told

the baby had to be delivered for my safety. At birth, unlike his sister, he

did not have a heart issue and was a good weight. However, as he grew we began

to notice little signs of trouble, repetitive behaviors, violent outbursts,

seizure like activity. He lived for the movement of his swing. As long as he

was in his swing, he was a happy baby. When I pointed the behaviors out to the

doctors, I was told that just because his sister was sick, didn't mean he would

be too, that he was just fine and to relax. I was terrified of another

Munchausen accusation, so I was not as aggressive as I should have been for him.

We

were told he was probably acting out from my being away at the hospital so

much with his sister. My concerns were virtually ignored by both the doctors as

well as some members of my family, until one day we were at the geneticists

office for an appointment with his sister and he had an episode in front of the

doctor. This doctor happen to be one of the main Mito doctors that the

previous geneticist had referred us to. I will never forget his looking at me

and

saying, " Is this what you have been talking about? Oh! We have a problem. " I

wanted to shout, " Houston we have a landing!!!!!! " Finally someone saw it,

and I wasn't crazy! My son was almost 3 years old at that point.

Our daughter had been getting pneumonia on a regular basis

and I was constantly in the hospital with her. We were told that if we did not

get her to a climate away from the ocean air, we lived in an area that was

within 25 minutes drive to the ocean and our air was damp a good portion of the

time, we would loose her due to a secondary issue of lung failure from all the

pneumonia. So I began the search for a place that we could afford to live in

and I could get a teaching job at, and was not going to be too far of a drive

to the Children's Hospital we seemed to be living at. We ended up in a

dessert/mountain area which only added about 40 minutes or so to our drive to

the

hospital. Our daughter has only had 2 more bouts with pneumonia since we moved

out here a little over 10 years ago. Because my husband had to work nights

so that there was always a parent available to the children, he had been in and

out of jobs, working night security for places, loading trucks at warehouses

ect. I was our main stay financially which was very stressful for me trying

to deal with 2 ill children and keep a job as well, I knew that I couldn't give

up because I was the one carrying the insurance for the children. If I gave

up, what would happen to them? My husband went through severe depression and

struggled with knowing that both the children were sick. He shut down

basically with helping with their medical issues. He refused to do any of the

medical

stuff, hospital stays doctor appointments ect. He would give them their

medication and deal with the at home stuff if he really had no choice, but he

would not deal with the clinical part to them. I can remember sitting in the

hospital with my daughter and her asking why daddy wouldn't come and see her,

had

she been bad. Trying to explain to a 5 year old that her dad was having some

problems but he loved her very much even though he hadn't come to the hospital,

was like trying to tell people Barney the dinosaur's voice wasn't irritating!

I was so mad at him for doing this to his daughter, but the madder I got the

further he pulled away. He told me that I did not understand what it was like

to be the dad. True as I was the Mom, who had been sitting in the hospital

with a very sick kid for the last 2 weeks! He said that he was supposed to

protect them and he could fix broken doll heads and wheels that came off of

trucks, but he couldn't fix them, and there wasn't a darn thing he could do

about

it! It was the first time in almost 6 years that he had verbalized how he felt

about the children's illness. Of course my attitude was " dude get over it "

and was very angry with him for taking the luxury of being able to step back

and say " you handle it " but at least he had finally said what his problem was.

He began to see a counselor at this time and slowly work through his

depression. It was very difficult for me to be his " cheerleader, " through all of

this

as I was so hurt and angry with him for in my mind, allowing himself to feel

sorry for himself. Had I done the same, my family would have fallen apart. I

was his wife and didn't want to be his mother.

Once the genetic doctor saw what had been going on with our son, the

testing began on him. Although he was showing signs, his were considered to be

much less than that of his sister,. I was very frustrated with this. Although

they were different from his sister, I did not feel in anyway they were less.

In fact his issues required far more of my time as far as dealing with the

fits of rage and behavior issues. I was not in the hospital as much with him as

his sister, but it required far more " work " to keep him healthy on my part. I

can remember praying for someone to just shoot me. I was working full time

teaching, taking care of 2 very ill children, spending my breaks at work on the

phone with the insurance companies trying to get the things that had been

ordered by their doctors covered, coming home to a house totally out of control

and laundry piled to the ceiling, and a husband dealing with depression. I

think the only thing that kept me going was the fact that I knew if I stopped I

would never get up again, and my children's lives depended on me and only me.

At one point I even highly considered making my daughter a ward of the state

and applying to be her foster Mom so I would get paid to care for her and I

could stay home and not " work " and just focus on taking care of the kids and

their

medical issues, and she would then get insurance through the state. The

medical bills were so high at this point again, we were struggling to keep a

roof

over our heads and food on the table. I had applied for state help, however I

was told that because I worked and was married, we did not qualify for any form

of governmental help. I was too afraid to make our daughter a ward of the

state because with my luck, I would have been denied being qualified to care for

her and loose her to someone else. I was not going to give up my child. We

were told that because our son was not showing signs at birth his prognosis was

much better than his sisters, however I was still very concerned because I

knew he had been showing signs since birth, but no one would listen to me.

Our oldest Daughter had been very ill with the apnea's and Aspiration

Pneumonia, and we had been in and out of the hospital many, many times. One day

she was having a really rough time and the home nurse decided that she was no

longer comfortable having her at home, so we set out for our Children's

Hospital 3 hours away, we had had her at a pulmonary appointment just that very

morning at the Children's Hospital. When we got there, we went straight to the

ER

room because the pulmonary on call had directed us to do so. It was then that

I was accused of lying to them about her having just been there and just had

chest x-rays that very morning. Even though I had the home nurse with me, the

ER Doc accused me of lying about trying to get her help and said I was

playing a dangerous game with my child, because he needed an x-ray to see what

was

going on, and they could not find any x-ray of her that had been taken that

morning. If she in fact

[Guest guest]

Dear ,

I am in awe of you. You are a valiant and most courageous and faithful

woman.

Please--get your book published!

After seeing your children's pictures at the science fair, with their

awards, I know they are only with you by the grace of God, and by your

loving tenacity.

I don't know what to say---I am speechless....

God bless.

S.

PA