Jonathan's story

From: Tammy  Carrington

My husband and I live in East Texas in a town called Diboll (about 125
miles NE of Houston). My husband works for the Texas Forest Service and
has been there for 23-24 years. I owned my own medical transcription
business until my son became sick and I had to shut it down in order to
care for my child.

When we married we decided that we would wait 2 years before starting
our family. When I found out I was pregnant after 2 years of marriage we
were so excited and began reading everything about pregnancy. I read
everything I could lay my hands on regarding healthy eating, nutrition,
and giving the baby the best start in life that I possibly could. I gave
up all chemicals in foods, aspartame and saccharin, caffeine, etc. so
that the baby would be getting only the best source of nutrition. I read
everything I could about each stage of pregnancy and I exercised each
day. I felt great and my blood work was the best they had seen in a
pregnancy in a long time. I then researched methods of delivery and
after participating in several classes and reading a bunch of books, I
decided that the best would be for me to go through labor and delivery
naturally. My husband and I had a private tutor who instructed us on the
Bradley Method of childbirth which taught you how to breathe and focus.
I didn't want the epidural drugs in my son's bloodstream and thought it
would probably be uncomfortable for me but it would be better for him. I
had absolutely no complications during my pregnancy.

When the day finally arrived that my water spontaneously ruptured at 41
weeks my experience with labor began. I went through 19 hours of labor
and the last couple of hours were the most intense since they had to
initiate Pitocin. Finally at 8:19 PM on 07/31/97 my little son arrived
into this world weighing 9 lbs and 7.6 oz.  He was 21 inches long and
let out a robust cry. There were no complications during labor or
delivery. He started to breastfeed within 10 minutes of birth and was
9/9 on the APGAR scale.

I researched and read everything I could lay my hands on while I was
pregnant so that I could make informed choices. The one thing that I was
never told about was the hepatitis B vaccine that my son would be given
in the hospital just before going home. If I had the opportunity to
research this vaccine prior to him getting it, he would have never
received it.

He was given the federally mandated hepatitis B vaccine when he was 3
days old just before we left the hospital. Within 4 hours he began
screaming at the top of his lungs and we couldn't get him to stop. We
called the hospital nursery and they told us that he was probably just
scared not being in the environment that he had become accustomed to
(with the sound of incubators humming etc.). My little boy never slept
and screamed a high pitched blood curdling scream all his waking hours.
He only slept for short periods (10-15 minutes) at a time and never
slept for more than 4 hours in a 24 hour period. We took him to the
pediatrician and we were told that it was colic and he would out grow
this. Since this was our first child, we didn't know what
was normal and what wasn't. We made many calls to the hospital staff
during those early hours. The pediatrician told us that this was colic
and that he would outgrow it by three months of age or so.

Jonathan continued screaming and we couldn't take him into public
because we couldn't control his screaming and certainly couldn't stop it
once it started. His screaming was so intense that his face would become
blood red and he had a look of "panic" on his face that I could do
nothing to help. He would wake up screaming even if he only slept for 10
minutes, in fact his screaming would start before his eyes opened. He
lost most of his baby hair.  He got his 2nd hep B shot when he was 2
months old and
the screaming continued. He was horribly constipated too and we ended up
in the pediatrician's office several times with this and they had to
"stretch his sphincter".

We thought we were going to go nuts with the continual screaming because
we spent all our days and nights trying to console him and make him feel
better to no avail. We had to hire some help so that we could get some
sleep, we were so exhausted.

When he was 4 months old he woke up after an unusually long sleep and I
got him out of bed to breastfeed him at about 9 am. I could not get him
to nurse. Every time I tried to nurse him, he started crying and rubbing
his little eye with his fist. He had always been a very good nurser and
I thought maybe he was teething and I gave him a little orajel on his
gums. This did not help his crying. I tried to give him a little taste
of Tylenol, sometimes a taste would distract his crying for a moment.
This did not do anything. I then called the pediatrician's office and
requested that we come in. I called about 9:30 am and said that we
needed to come in "this morning". I really thought it was an earache as
I heard that most kids seem to get them but I wanted him to be looked
at. They told me to be there at 10:40 and the doctor would see Jonathan
before lunch. While I was getting Jonathan ready he threw up and was
heaving. He had not eaten anything since the night before. He became
very pale. Our pediatrician was out of town and we were seen by her
partner (who had never laid eyes on my child).  This doctor actually saw
Jonathan by 11:00 and did not like the way he looked. He did some labs
in his office which were all negative. He sent us to the local hospital
for blood cultures and a chest x-ray which were both negative. He asked
us to return at 2:00 and he had a gut instinct that he wanted to do a
lumbar puncture. He explained to us that in med school they told him
that if he ever thought LP for one second, then DO IT. He said that he
wanted to do it. The LP revealed 3 vials of bloody fluid, just like a
blood draw and he told us that this should look like water. He sent us
immediately to the hospital for a CT scan of the head. The radiologist
read the CT as a mass in the brain that had hemorrhaged. (Later
determined to be a ruptured aneurysm within the next week). He was
rushed off to ICU and air transportation was arranged while he was
intubated. My baby was on death's door in a matter of moments.

He was life flighted by helicopter to Shreveport, Louisiana (Schumpert
Medical Center) and he died in the helicopter and was resuscitated and
began having seizures. Once he got to the PICU he died two more times
and they resuscitated him. They worked on him for over an hour and his
brain went without oxygen for a total of approximately 30 minutes. He
was on total life support in a coma and was given no chance for survival
through the night. They did a lot of testing to try and find the source
of the bleed. He eventually had an arteriogram which showed the images
of the aneurysm.  He survived and 10 days later his aneurysm ruptured a
2nd time. They said that there was 3 times as much blood this time and
they didn't know how he survived the first bleed. They gave him less
than 24 hours to live this time and said that his brain was already
herniating. We were praying all the time and believing for miracles.

He survived and we found that there was only 1 doctor in the country who
could deal with our situation in a child so young. One doctor in
Shreveport (pediatric neurosurgeon) told us to just let Jonathan die and
that it would be
wrong for us to do anything to save his life. He said, "He is damaged
goods, nothing but damaged goods and to do anything about it is
inappropriate". We were not going to sit back and let our child die once
he had already survived what he had. We then went to California where he
was going to
have embolization of the aneurysm with interventional radiology. Nine
were in there with my son and it was going to take 8 hours (they had to
do the procedure through an arteriogram in through a vein at the groin,
weaving a catheter up into the brain), but after only 2 hours the main
doctor doing the procedure came out and said, "well, we're done. We
can't explain it but the aneurysm is gone".  We said that we could
explain it because we had been praying so hard. All the other doctors
came out scratching their heads saying that they couldn't explain it

My son had to have a shunt placed the very next day because his
intracranial pressure became too high. His shunt worked too good and
caused a bleed on the opposite side of his brain (subdural
hematoma/effusion) which had to be drained externally. He then had to
have surgery to place his G-tube because his stomach was anatomically
behind his rib cage and couldn't be placed endoscopically like most.  He
was diagnosed with cortical blindness, severe reflux and high risk for
aspiration pneumonia.  He has severe developmental delay, has a mixture
of hypotonia and does have some spasticity.  He is 24 hour care for 2

Jonathan was recently diagnosed with the following as well: spastic
quadriparetic cerebral palsy with microcephaly, cortical blindness,
marked dysphasia. He had global developmental delay secondary to hypoxic
ischemic encephalopathy as a result of spontaneous rupture of a left MCA
aneurysm. Intractable, symptomatic mixed seizure disorder secondary to
rupture of left MCA aneurysm. He appears to have infantile spasms,
partial seizures, myoclonic seizures, generalized tonic seizures. These
are improved on the ketogenic diet.

We saw a physician in Houston who specialized in Hepatitis B adverse
reactions and he did a battery of tests. His name is Andrew Campbell,
MD.  He told us that Jonathan definitely did have an adverse reaction to
the hep B vaccine.  We had a SPECT scan by Richard Neubauer, MD in Ft.
Lauderdale who also stated that Jonathan had toxic anoxic encephalopathy
directly related to the hepatitis B vaccine and this was not the first
time he had seen it and unfortunately would not be the last time he
would see it. We were also told that Jonathan's intracranial pressure
was so intense for such a long period of time from his prolonged
horrific screaming that the vessel couldn't handle the pressure and
ruptured. I was told that brain vessels are the thinnest vessels and are
not built to withstand intense and prolonged pressure.

My son is now 29 months old. He was in the hospital for a total of just
over 4 months before we were able to bring him home. Hospital dates were
12/11/97 through 04/08/98. We initially went to Shreveport then we were
transferred to San Francisco and then back to Shreveport before coming
home. We never returned home during that entire hospital course. We
remained at Jonathan's side.

My son requires 24 hour nursing care which is provided by myself (as I
had to quit my career), my husband (who has to work to support us), and
a nurse who is paid by our insurance company. She is here 6 hours a day
5 days a week. We have no help on the weekends at all. We have no family
close by and our church family has stood behind us.

Jonathan has a compromised immune system and cannot be around other kids
or anyone that is sick. We are basically homebound. He was having
100-200 or more seizures a day, every day. We started the ketogenic diet
for seizures and changed his medications and he now is having 30 or so a
day now. He is g-tube fed every three hours and because of his reflux he
must be held upright during feeding and for 1 hour afterward to prevent
aspiration. With the ketogenic diet, because it is compromised of 90
percent fat, if it were to get into his lungs, he was be in great
trouble. He has medications that must be given throughout the day and
must be crushed and put into a syringe, then into his feeding tube. He
cries a lot and requires full attention because of his gagging. He stays
very constipated and the ketogenic diet makes this worse. He gets enough
Milk of Magnesia every day to move an adult, and sometimes this doesn't
help him. We end up having to use BabyLax and Baby Fleets enemas. We
must monitor his ketones, seizures, urine output, and stool to ensure
that everything is in balance. He still does not sleep just a whole lot.
He goes to bed around 3 am each "night" and sleeps until somewhere
between 7 and 10 am.  He will usually take a 1 hour nap during the day
and a 30 minute nap in the evening. Someone must be with him, holding
him, consoling him, feeding him, caring for him during all his waking
hours. That would be myself and his father. He must also sleep in an
incline position on a reflux wedge in his crib.

Recently he has been sick with the virus that has been going around. He
needed breathing treatments every 3 hours around the clock. He literally
did not shut his eyes for 4 days and 4 nights. He had fever that lasted
for 7 days. We were bathing him with a cool cloth, he had no clothes on
except his diaper and we were monitoring his temperature to make sure
that it didn't continue to rise. My husband ended up sick and I had to
be the nurse around the clock.

We have tried to receive some type of assistance to help us with nursing
care. We have been denied everything except the Early Childhood
Intervention which doesn't provide nursing care, it provides therapy at
home. We applied for SSI, Medicaid (twice), MDCP (on a waiting list with
a 3-5 year wait), CLASS (not in our area yet, but on the waiting list
for when it does come here), CIDC, Blue Cross/Blue Shield, CCP, Burke
Center (local agency), Medically Needy Program, United CP Foundation,
all of our state and local legislators all to no avail. My husband makes
about 75.00 a day and that seems to be too much for us to qualify for
any program. My husband is supporting a family of 3 and trying to
stretch the money to pay for all the extras that insurance doesn't pay
for. We desperately need some help with nursing care. If my son were on
Medicaid, he would be receiving 16 hours a day of care, 7 days a week.
That would change our lives and help us to give Jonathan better care. We
do all that we physically can, but when we get sick from getting no
sleep, not eating right, and not taking care of ourselves...what will
happen to Jonathan? We don't want to get to that point.

My son was injured by the hepatitis B vaccination and it was federally
mandated. Where is the government now that we need help in dealing with
the repercussions? We were told that if we would just get a divorce we
would qualify in a second. We are Christian people and in this type of
stressful situation, it is hard enough to keep your marriage and family
together without the government encouraging you to divorce. We were also
told that if Fred would just quit his job we would qualify. It is true
that if he quit we would qualify but he is an honorable man and is
working to pay our bills. He makes less in a day's work than our nurse
is paid for working 6 hours here. We cannot afford to pay for what my
son needs on my husband's salary and we make too much to qualify for any
assistance. We are the working class that seem to slip through the

We are desperately looking for solutions and options. We are not
hopeless. I believe that there is a difference. We have a case pending
with the Vaccine Injury Compensation Program and I understand that it
will take years before that is finished. I am sure that I have left out
many programs that I have called and others that we have applied for but
we have not found our answer yet.

I tried to include everything that I could remember, but these days my
memory isn't what it used to be. Please feel free to e-mail me at  

Sincerely, Tammy Carrington

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