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From:
Evi Adams <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Mon, 19 Dec 2005 16:22:35 +0200
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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.



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