IBFAN Europe just sent emailed this letter from a mom who asked that
her story be sent out so that others do not have to suffer.
There are no warning labels on infant formula.
Evi Adams
Israel
Kylie's Story: Trauma from Powered Infant Formula
My daughter, Sarah Kylie (we call her by her middle name) was born a
healthy full-term baby on July 13, 2005. I planned on nursing her, so
shortly after birth we had our first nursing session.
I had gestational diabetes while pregnant; therefore the
need to check Kylie's glucose levels for the first 24 hours was
needed. Her levels were low so she was given a bottle of Similac
Advance, thus leading to the need to supplement feed her until my
milk came in. Barbara B Gmail
When we left the hospital we were given a diaper bag as
a promotion for the formula company. In this bag was a sample can of
powered Similac Advance. I planned on using that can and the other
bottles of ready to feed formula to supplement feed Kylie until
breastfeeding was established.
Since I had fed some of my other children powered infant
formula I thought nothing of using the sample can. Kylie was fed a
few ounces of this formula, with her last supplemental bottle of
formula mixed with expressed breast milk. Monday, July 18 was her
last bottle as my milk came in and we had established breastfeeding.
Everything was going great until Thursday July 22, 2005.
On the way home from running some errands, Kylie started to cry and
whimper. This was not like her as she was a very content baby. I
figured she was hungry so I nursed her as soon as we got home. She
was still fussing off and on during feeding, but finally fell asleep.
She slept from a little after 3 p.m. until around 6:30. By that time
Rich, her father, had gotten out of work. When she woke, she
continued to be fussy and refused to nurse. He thought she felt a
little warm so we took her temperature which was 100.9. I had
remembered that my doctor had said that anything over 100.4 warranted
a trip to the emergency room.
We got a sitter for the other kids and headed to the
E.R. Call it mother's intuition, but I just knew that something was
seriously wrong with my baby.
We ended up sitting in the E.R. for 2 hours before the
doctor came in to see Kylie. Since she was so young and running a
fever they ordered a bunch of tests. One of the tests was a lumbar
puncture, which they tried 3 times and was unsuccessful. Kylie was
admitted to the hospital for observation and to wait for the test
results to come back. This was the beginning of our nightmare.
The next day was a slew of more blood draws (because the
blood the techs got kept clotting before they could get the tests
done) and another attempt at a lumbar puncture. After two more
unsuccessful attempts Kylie was transferred to DeVos Children's
Hospital in Grand Rapids.
Once we arrived there, there was another series of blood
draws and yet another attempt at a lumbar puncture. The second try
was successful! A couple hours later we received the news I was
hoping to not hear: our baby had bacterial meningitis. The samples of
spinal fluid would be allowed to continue to grow so the bacteria
could hopefully be identified.
Kylie was in the hospital for 3 weeks on I.V.
antibiotics. Words cannot even describe how we were feeling. Kylie
was extremely sick and we knew that we could lose her at any time.
Her white blood-cell count in her spinal fluid was 109,000, which we
were told was extremely high. We watched as our baby swelled up from
fluids and her head swelled from the infection. She had seizures due
to low sodium levels and an MRI gave us the devastating news: Kylie
had had some strokes and now had significant brain damage. Both sides
of her frontal lobe were destroyed, with one side being worse than
the other. We were told the worst case prognosis for her future. She
also endured several I.V. changes until a central I.V. line was
inserted into her chest. The central line also allowed for blood
draws so she didn't have to be poked for blood tests. One last lumbar
puncture was done to check on her white blood cell count.
After days of waiting to hear if the lab had identified
the bacteria, we were told it was a rare bacteria called Enterobacter
sakazakii. We were asked if Kylie had been fed powered infant
formula, to which we replied yes. We were then asked to bring in the
can of formula we had fed her from because it was going to be sent to
the Center for Disease Control for testing. We were horrified to
learn that our baby was ill potentially by something that we believed
to be safe to feed her.
We were contacted by a lady from the local health
department who was investigating the case. We were also contacted by
the Michigan Department of Agriculture to come out and do swab
testing in my kitchen. I was also in contact with a guy from the
local Food and Drug Administration office.
Once we found out the name of the bacteria, we began our
own search for information. We did searches on the internet for
Enterobacter sakazakii and much to our surprise and horror, most of
the information linked meningitis caused by the bacteria to powered
infant formula. Something that we did not know is that powered infant
formula is not a sterile product. This only pertains to the powdered,
not the ready-to-feed or the concentrate, which is commercially sterilized.
This is an issue that the USFDA and world organizations
are aware of, as it is a global problem. There have been recalls on
cans of powered formula because of Enterobacter sakazakii
contamination. The contamination has caused outbreaks of sickness in
neonatal centers worldwide. At highest risks for infection are
premature newborns and those with underlying medical conditions, but
even healthy, full-term infants can become sick. Mortality rates are
high with infections from the bacteria and survivors are left with
severe neurological damage.
The FDA makes it a requirement for labeling on
unpasteurized juices to contain information that the product could
contain bacteria harmful to young children, the elderly and people
with compromised immune systems. The question remains to be answered;
why does the government not require the same labeling on powered
infant formula? If you've ever taken the time to read the entire
label on the can, you will see that nowhere does it state that the
product is not sterile and could cause serious illness to infants.
What you will find is that it is advised to sterilize all utensils,
bottles, nipples, rings and water that will come in contact with the
formula. All of that sterilizing and the main part, the formula
itself, is not sterile.
As a consumer, I feel that I was not well enough
informed about the possible contamination. Had I have known, I never
would have fed my newborn powered infant formula. I don't believe
that any parent would want to put their child at risk for contracting
such a serious illness, but without the proper information out there
about the powder, that is exactly what is happening.
After weeks of waiting for answers from the testing, we
got the call from the lady at the health department; our can of
formula was found to be contaminated with Enterobacter sakazakii. It
was also found in one other spot in the kitchen-the spot on the sink
where I had dumped out the unused formula. We were also informed that
testing was ongoing and could be quite some time before it was all finished.
Kylie's ordeal did not end with the three week hospital
stay. At the end of September 2005, she developed severe
hydrocephalus. She had to undergo surgery to insert a shunt into her
brain to drain the excess fluid. It was explained to us that because
of her young age there is a high incidence for future surgeries as
the shunts tend to malfunction and can become obstructed. There is
also the risk of infection, which could cause another case of
meningitis. If her shunt was to become infected she would be
hospitalized for two weeks for antibiotic therapy and would have an
external drain until a new one could be placed.
Kylie's surgery was done on a Thursday evening. She did
very well during the surgery and was able to come home on Saturday morning.
Ever since the shunt surgery, Kylie has had very
noticeable suture lines on her head. The week before Thanksgiving I
noticed that they were going away and her fontanel was level to her
skull (it had been noticeably sunken before). The day after I had
made that observation her fontanel was bulging and she was a bit on
the fussy side. Since Rich was supposed to go out of town, I thought
it would be best to take her in that night to make sure nothing was
wrong. I took her to a local hospital to have her checked out since
the children's hospital is almost 45 minutes away. We ended up going
to the children's hospital by ambulance.
I had expected to be told that the shunt had
malfunctioned. The CT scan done at the local hospital showed
something even worse: Kylie had subdural hematomas on both sides of
her brain. I was questioned about whether or not she had been dropped
or hit on her head. I had bumped her head on the handle to her
carseat as I was getting her ready to go to the hospital, but I was
told it would have had to be a harder blow than that. Rich and I
racked our brains trying to think of how or what could have happened
to cause bleeding on her brain. We were extremely careful with her to
make sure that nothing and no one bumped her head. She had already
been through enough and had enough damage; she did not need a
preventable injury.
The shunt had not malfunctioned and was not obstructed.
The ventricles in Kylie's brain were not communicating and draining
the way they were supposed to. She was to undergo an operation called
fenestration, where the surgeon would drill a hole in her skull and
go into her brain with a scope and poke holes in the membranes with a
laser. This would hopefully let the sides communicate and drain;
therefore letting the shunt do its work.
Once again, we went in on a Thursday night. Since she is
high risk for seizures and the surgery was not scheduled until the
next Tuesday, she had to stay in the hospital. She was in the
Pediatric Intensive Care Unit when we arrived, but was transferred
into a regular pediatric room the next day.
A CT scan was scheduled for Monday to see what was
happening with the bleeding and to check on the fluid levels. We were
very happy to hear that there was no new bleeding and the old blood
was already being reabsorbed. Also, the fluid level was stabilized.
Tuesday was a very nerve wracking day. It was almost
noon by the time we were taken to have Kylie prepped for surgery. In
a way it was a good thing that the excess fluid made her sleepy
because she was on orders of nothing to eat since 2 a.m. A brief
discussion with the surgeon was not very reassuring to us on her odds
of making it out of the operation without any more damage or even
making it through the surgery at all. I was a crying mess by the time
I had to hand her over. After 3 agonizing hours, the neurosurgeon
came out to tell us she had made it through surgery with no seen
complications. She had done so well through surgery and recovery that
she was allowed to come home the next day. We definitely had
something to be thankful for this Thanksgiving!
As well as she is doing now, we know that at any time we
could end up back in the hospital. We won't know if the bleeding is
back, which could be fatal for her. The shunt could malfunction or
become obstructed. There is the threat of infection. We also know
that every surgery is a risk of more brain damage or even death.
As you can imagine, it is very stressful for our family
every time Kylie is in the hospital. We will not leave her there by
herself, either Rich or I am there with her all the time. We have 6
other children and we try to keep their routine as normal as possible
for them.
It is also a financial strain. Her medical bills are
nearing the $100,000 mark and she's only 5 months old! We now have
Medicaid for her bills, but we still have the costs of gas to go back
and forth to the hospital when she is there, plus all of her
appointments. We have to pay for our food while we are there and let
me tell you, hospital cafeteria food is not cheap!
How ironic is it that the costs are adding up so fast
now, when we thought we could save ourselves some money by using a
free can of powered infant formula.
As consumers, we have a right to know about the safety
of the foods we are feeding our infants. There needs to be stronger
laws about labeling and warnings about the risks of contamination. We
were very surprised that a majority of people, doctors and nurses
included, do not know that powered infant formula is not a sterile
product. We are hoping that by sharing our story it will save others
the needless suffering that our family, and especially Kylie, has
endured because of this.
***********************************************
To temporarily stop your subscription: set lactnet nomail
To start it again: set lactnet mail (or digest)
To unsubscribe: unsubscribe lactnet
All commands go to [log in to unmask]
The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(R)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html
|
