Day 3 (June 27) – Day 6 (June 30)

We followed much the same routine for the next several days.  On the third day, St. Joe’s was kind enough to let me stay in my room an extra night.  Scott and I spent every waking moment in the NICU; however.  I was breastfeeding when Ian was able.  When his breathing was not well, he was either gavage fed or we would give him a bottle. 

After the third day, we were able to stay in a family room down the hall form the NICU, as we weren’t going home without our baby boy!  There was not one moment I left his side, unless I was eating or using the restroom.  We read books to Ian, rocked him, changed his diapers, and bathed him.  We were there for every single feeding.  In the wee hours of the night and morning the nurses would call our room.

We would cruise down the hall in our pajamas to see and feed our handsome boy.  While visits in the NICU were limited, we did have a few.  Our parents were there every single day, for example.

We were set to close on a home at this same time.  Our mortgage broker sent a representative to the hospital so I could sign over power-of-attorney rights to Scott.  Scott was left to close by himself.  This was supposed to be such a happy day.  We were buying this house for Ian to grow up in, and neither Ian nor I were able to be there.  This was very sad, but Ian and I were able to spend some quality mom and son time together at the hospital while daddy took care of our new house.

Scott and I hounded the doctors every day.  We wanted as much information as possible.  We asked more and more questions.  We didn’t understand why Ian was still there.  We learned quickly our constant questions were not always welcome.  We asked anyway.

Day 7 (July 1)

Finally!  The nurses at St. Joe’s indicated that the doctors felt Ian was okay to go home the next day!  Just two things needed to be completed before he could be released.  He needed to pass his hearing test and receive his hepatitis B vaccination.  I blame myself here as a mother for not having been completely educated on vaccines.

Fact: It is suggested that infants get the hepatitis B shot before they leave the hospital.  It is not required.  Fact:  You can work out your own vaccination schedule and guidelines with your pediatrician.  Fact: You can order vaccines directly from the drug company with fewer additives and in single doses.  Fact: An infant’s immune system is very weak at birth.  The hepatitis B vaccine can cause serious reactions if the system is already compromised, as was Ian’s. 

Ian received his shot.  By that evening his fatal allergic reaction had begun.  Every doctor and nurse at St. Joe’s conveyed the very same message:  Ian’s reaction could absolutely not be from the vaccine.  “Vaccines cannot cause this.”   “Mom, all babies get rashes and the vaccination cannot cause a rash of this nature.”

Now, if we would have been provided the Vaccine Information Sheet (VIS) dated 7/11/01 as law requires, we would have known that “serious allergic reaction (very rare)” to the vaccine is possible.  Incredibly, during the short time between Ian’s birth and death, a new VIS for the hepatitis B vaccine was released on 7/18/07 for the first time in seven years that better clarifies that “Severe problems are extremely rare. Severe allergic reactions are believed to occur about once in 1.1 million doses.  A vaccine, like any medicine, could cause a serious reaction. But the risk of a vaccine causing serious harm, or death, is extremely small.”

Shouldn't the doctors and nurses at St. Joe's be aware that even the CDC's vaccine information sheet advises severe allergic reaction to the hepatitis B vaccine are possible?  If they are not, then how can they know to consider the vaccine as a possible cause when there is a reaction?  Is it really possible that that not one doctor or nurse who saw our son knew what is clearly indicated on the vaccine information sheet?  My son proved to us that a reaction to the hepatitis B vaccine can happen.  Since that time, we have learned that it happens more often than is reported.

The VIS indicates that if a child has an adverse reaction parents should, “Ask your doctor, nurse, or health department to report the reaction by filing a Vaccine Adverse Event Reporting System (VAERS) form.”  The VIS implies that it is the parent’s job to ask their healthcare provider to report the reaction.  This may be due to the fact that it is common knowledge that where parents do not specifically push for the severe reactions to be reported, the reports are largely unmade.  Shouldn’t it be automatic that medical professionals report adverse reactions?  How is it otherwise possible that reporting from VAERS would even come close to representing accurate numbers?  One of Ian's neonatologists at Children’s Hospital of Wisconsin did report Ian's case to VAERS.  She also wanted to document Ian's life in a case study for the Journal of American Academy of Pediatrics.  Children's Hospital prohibited her from doing this.

Writing this story has been very difficult.  Some days I would only get a sentence in before I would start crying and stop.  If I would have finished this story before January 15, 2008 when we learned more about the hepatitis B vaccine, our newfound knowledge would not have been part of Ian’s life story.  I would have said this incident was a medical phenomenon, as we did not have the information we have now. 

My father-in-law Larry said all along the cause was the hepatitis B shot.  Scott and I knew the same and kept telling the doctors at St. Joe's this.  No one listened.  Later, when we were at Children's Hospital, nearly a dozen specialists saw Ian.  All said about the same thing, "Something insulted his system, but it was not due to my specialty."  No one could figure out what was doing the insulting.  Again and again we suggested the vaccination as the cause.  We were told each time it was impossible.  He was poked, prodded and tested for the rarest of rare diseases, yet the vaccination explanation would not be considered.  We could not figure out why not.  While Scott and I insisted it was the hepatitis B vaccine, we were continually told that this was not possible.  You be the judge, after you read the facts and see the pictures.

Ian passed away in August 2007.  In October of that year, Scott and I asked Ian’s neonatologist at Children's Hospital to write the federal government to see if there were any cases similar to Ian’s.  In January 2008, much to the astonishment of Ian’s neonatologist and the entire Neonatology Board at Children's Hospital, a CD from the Center for Disease Control (CDC) arrived indicating that there were “several” (which means hundreds) reported cases exactly like Ian’s; cases in which infants became ill within 24 hours of receiving the hepatitis B shot and then passed away.  These are just the self-reported cases.  What about those cases that have gone unreported?