March 19, 2009 - 22:01 ET
Back in January of 2005 Sarah Hoiberg took a perfectly healthy baby girl of 18 months into the pediatrician for a scheduled round of vaccinations. Little did the Hoibergs know that their lives were going to be changed forever within the next 24 hours.
That night was a rather unusual night, Caitlyn Hoiberg was fussier than normal, but she had just had a round of vaccinations. The next morning is when our world would come to a halt
Caitlyn was a late sleeper and would usually not wake up until 10:00am. Sarah was home with Caitlyn and suddenly heard a voice tell her, Go check on Caitlyn. Sarah went to Caitlyns room and found her lying in a pool of dampness on her bed completely unresponsive. Sarah picked up Caitlyn and her head fell to one side. Caitlyns body was stiff on one side and loose on the other.
Immediately Sarah called 911, the neighbor down the street, being a Fire Fighter, rushed to our house after hearing the call go across the dispatch. Our neighbors were able to aid Sarah while Jacksonville Fire & Rescue Department was in route. JFRD arrived and immediately tended to Caitlyn trying to get, what we had just found out were seizures, under control. All this time Sarah kept telling the paramedics, She just had her shots yesterday. At this point Chris Hoiberg was leaving the dentist and on his way to meet Sarah at the ER.
Once at the ER, Caitlyn was immediately taken in and the ER staff began attempting to stop the seizures. Eventually she had enough drugs onboard that the seizures stopped, but by this point, her brain was so tired that all she was doing was laying there in an unconscious state. We eventually made it up to a room in the PICU (Pediatrics Intensive Care Unit). Caitlyn did not wake for several days after being admitted into the Hospital. During this time, Chris & Sarah kept telling the doctors, She just had her shots yesterday, but it was falling on deaf ears.
The doctors were running tests all week long and were coming up empty handed, Infectious Disease was called in and yet no test they performed was yielding any answers. They tested for things like Lime Disease & Cat Scratch Fever. During this time, Chris & Sarah were researching the side effects of the shots Caitlyn had received the day before, and of the shots one stood out in particular, the Pertussis Antigen in the DTaP (Diphtheria, Tetanus, and acellular Pertussis) vaccine. Pertusis carries a Moderate Problems (uncommon) side effect of Seizures & Severe Problems (Very Rare) (according to the CDC) side effect of permanent Brain Damage. It was at this point Chris & Sarah knew for certain what the root cause of what had happened to Caitlyn. All during these tests, Chris & Sarah kept insisting it was the vaccine that caused this reaction. All they kept hearing was that Vaccines are safe do not do that
It wasnt until all those tests were run that Chris & Sarah received the devastating news from Caitlyns neurologist that Caitlyn did in fact have a Brain Injury, an Acute Encephalopathy of the right front temporal lobe of her brain. This was the devastating news that confirmed what Chris & Sarah had thought all along.
What an Acute Encephalopathy of the right front temporal lobe of her brain meant for Caitlyn was life changing. As humans, we are cross wired, the right side of our brain controls the left side of our body as the left side of our brain controls the right side. Speech and fine motor skills are located in the front of the brain. Most people have their speech and fine motor skills in the left side as most people are right handed. But studies have shown that people predominantly left handed can have their speech and fine motor skills in the right side of the brain. Caitlyn was a lefty, the only one in our immediate family (Chris comes from parents that were both left handed). Since the injury was in the right front temporal lobe, Caitlyn had lost all her speech, fine motor skills, and control & movement of her left side extremities.
For weeks Caitlyn laid in the hospital, in and out of the PICU. Family by her side 24/7, there was not a single moment that either a family member or close friend of the family was not in the room with her. The Hoibergs were sleeping in the PICU with Caitlyn every night and family would relieve them during the day for short breaks to clear their head and get fresh air. Eventually Caitlyn made it out of the PICU and into a room. At this point the Hoibergs were able to setup a schedule. Sarah would be there during the day, Chris would come by after work and spend the night and wake up the next morning and go to work to have Sarah come back and stay during the day. Family & friends would take care of Laura, Caitlyns big sister, and get her to and from school and provide care for her in the evenings. One night a week, family would spend the night to allow for Chris, Sarah, & Laura to have one evening at home together during the week. During their time in the PICU, Caitlyn had more seizures and the Hoibergs almost lost Caitlyn on several occasions.
A day or so before Caitlyn was to go home; her neurologist came by to check on Caitlyn and told the Hoibergs they needed to file an Adverse Reaction Report with the VAERS (Vaccine Adverse Event Reporting System) website which is a cooperative program for vaccine safety of the Centers for Disease Control and Prevention (CDC). Chris & Sarah later found out that their Pediatrician had sent the form in as well.
Caitlyn went home close to a month after being admitted to the ER on Chris Birthday. When the Hoibergs brought Caitlyn home, she could not sit up nor hold her own head up. Caitlyns muscle tone had deteriorated from being in the hospital for close to a month without the ability to move her muscles. All Caitlyn could do for several months after was sit in a feeding chair and moan.
Things did eventually start to get improve after Sarah immediately started Caitlyn into intense PT (Physical Therapy), OT (Occupational Therapy), & ST (Speech Therapy). Sarah did not waste any time getting Caitlyn into these Therapies. What the Hoibergs learned is that, even with the damage the shot caused, was not all lost, childrens brains are still developing at an early age and their brain is still like plastic, it is still molding and there is still the possibility of remapping what was lost, but this requires intense therapy.
Caitlyn reached a milestone when she started walking again (with the aid of a brace). This was something the doctors told the Hoibergs not to expect Caitlyn to be able to do again.
To this day, Caitlyn has very limited use of her left arm; she does not talk, and has trouble understanding right & wrong. Caitlyn has been hospitalized several times since her initial visit for seizures.
Caitlyn is almost always smiling; she is capable of using sign language for very limited requests and can now run. She is however attending ABA (Applied Behavioral Analysis) schooling 5 days a week with one on one teaching. She is still receiving PT, OT, & ST is also doing Hippotherapy. To this day, the doctors cannot speak to what lies ahead for Caitlyn, the Hoibergs are in uncharted territory and doing the best to get Caitlyn what she needs for what they believe will be a full recovery.