A Look Back: Remembering Our 2008 New Year's

With the coming of this new year upon us, I have been deep in thought about where my little family was this time last year.  One year ago today on January 10, 2008, Josh and I brought Audrey home from an eleven day stay at the Pediatric ICU center at Sutter Memorial Hospital.  With many of you being familiar with what happened, I'm sure you remember that Audrey came down with Infant Botulism, a very rare disease, also known as an orphan disease in the medical community.  About only 100 infants are infected per year in the United States, and our Audrey just happened to be one of them.  In case you are not familiar with Infant Botulism (trust me, most people have never even heard of it) an infant contracts Infant Botulism by breathing in a spore that was released into the air.  These spores live within the earth, and become airborne when there is movement to the soil.  This could be from construction, digging, tilling, farming, etc.  Once the infant breathes in that spore, and for that spore to take root in the body, the infant needs to have a comprised immune system at the time, and they also need to be constipated.  If all of these conditions occur at the same time, creating the "perfect storm", the spore begins to attack the infant's nervous system, shutting it down - thus leaving the infant basically paralyzed.  Our Audrey started to act strange on the 30th of December. At first she had a hard time nursing, almost like she had forgotten how.  By the next day, Audrey had lost all ability to hold her head up on her own; it was flopping from side to side like a newborns.  We took her in to the doctor, who referred us to Sutter Memorial Hospital, and when we arrived, we were told that our room we almost ready.  "Our room is almost ready?" I remember thinking in a haze.  I was so confused.  By this time we still did not know what was wrong with Audrey, but we knew that whatever it was, wasn't normal.  I remember being escorted to the room and walking into the Pediatric ICU.  Panic shot through me, and I remember trying to stay calm.    When Dr. Smith arrived to examine Audrey, he asked us a few questions about her, examined her to test her strength (with was almost gone by this point) and said "Excuse me while I grab a chair.  I need to discuss your daughter's diagnosis with you."  Instantly I thought, "is this going to be the worst day of my life?"  When Dr. Smith sat down he told us that he thought Audrey had Infant Botulism.  He explained what it was, and emphasized the fact that Audrey was going to be okay; most children who contract Infant Botulism make a full and complete recovery.  She just needed to have a single shot of a drug.  He told us that we may be here for a bit, but that because we caught it in enough time her prognosis looked good.  He went to order the drug (the hospital did not carry it), and Josh and I began making plans for the night - our New Year's Eve.  It was only over the course of the next couple of days, did I become to realize just how scary Infant Botulism is, and how very lucky and blessed we were with our precious Audrey.  This is what I learned:

• Like I previous mentioned, Infant Botulism shuts down your ENTIRE nervous system, leaving the infant paralyzed.  The process happens within a matter of hours.  This is why infants suddenly can't nurse (they loose their ability to suck), and this is also why most infants who contract Infant Botulism are put on a respirator.  With the ability lost to contract their muscles, infants loose the ability to breathe on their own.  Because Audrey was diagnosed in enough time, this didn't happen to her.

• Most Doctors are not familiar with Infant Botulism.  The symptoms for Infant Botulism can look almost like anything: not wanting to feed, constipation, & dehydration.  Until you add "lost the ability to hold themselves up" and if you have a doctor who doesn't know what this might mean, the child often gets "lost" in the system.  Luckily we had an experienced Doctor with Audrey who had treated a case of Infant Botulism a couple of years previously.  Most mother's that I have talked to whose child had IB, watched their child get poked and prodded with every test imaginable while they slipped deeper into the disease.  All of their children ended up on a respirator because the doctor's didn't realize what was happening.

• When Dr. Smith told us that Audrey would need a single shot a drug, and that he had to go and order it because the hospital didn't carry it in stock, I truly didn't grasp what he meant.  The shot that Audrey received is called the Baby BIG shot.  NO hospitals carry this shot; it is kept in Southern California, I'm guessing at the lab where it was created.  When Dr. Smith "ordered" this shot for Audrey, it was personally flown up to Sacramento on New Year's Day where it was hand delivered to the pharmacy and mixed for Audrey.  The hospital had to get clearance to agree to pay for the drug before the drug was even put on the plane.  Wondering what the cost of this drug was?  A shocking $45,000.  FOR ONE DOSE.  However, one dose is all Audrey needed.  The Baby BIG shot was approved by the FDA in 2003.  Before this shot was approved, the average stay in the hospital for a child with IB was roughly six weeks, with a ventilator.  Our stay with Audrey, without a ventilator, was eleven days.  Thank God for modern medicine.

Throughout this entire experience with Audrey, I was beyond humbled by the kindness and generosity of people.  I was also amazed at the strength that both Josh and I mustered.  Those eleven days were undoubtedly the longest of my life.  At times I felt like I was watching my child die before me, and at other times I was celebrating her own little victories ("Look, did you see her grasp the rattle?!).  When Josh and I walked out of that hospital a year ago today, Audrey was quite weak, and still very little, but she was okay.  Within a couple of days she was smiling, laughing, and had returned to herself.  Her doctors warned me that because of the damage done to her nervous system, and because all of her neurons needed to grow back that she will likely miss and be slightly behind on her developmental milestones.  What the doctor's didn't account for was her will and determination.  She never missed one milestone, and even began walking at 11 months.  Our Audrey is a fighter, for that I am sure - and I have never been so proud.  Today she is a busy toddler running around and destroying everything in sight.  She will never remember what she went through, and for that I am grateful.

I felt a strong urge to post this story today.  To honor the memory of those eleven days, knowing that we are so richly blessed.  Thanks for reading & remembering with me.

   

Audrey & I a couple of days into her hospital stay.

Audrey resting while in her crib at the hospital.

Audrey on January 14th, three days after returning home.

Audrey today - a beaming, happy and healthy little girl.