Katie van Tornhout: Immunization Advocate

little baby

Callie Grace was our 4lb 5oz Christmas Eve miracle baby. She came along after five years of trying and five miscarriages. There was never a more loved, more longed-for baby.

Callie was born 6 weeks early and spent 12 days in the NICU.  Once she came home, we felt at ease and finally had our family we longed for under one roof.

Callie thrived.  She ate like a champ, was always happy and was just perfect.

On January 24, 2010 she had a slight cough.  Not a big cough, more of one that sounded like a child mimicking their parent.  After a long, sleepless night we took her to see the doctor Monday afternoon.

After an exam, they said she was great.  No congestion, no fluid and nothing to worry about.  Great!  We went home and everything was fine.  She slept all night Monday and woke up Tuesday very groggy.  She didn’t seem like herself. But, we chalked it up to being gone Monday and throwing off our routine.

Tuesday night she again slept all night and woke up very pale and lethargic.  She barely ate and when she did, she just threw it back up.  I immediately called the doctor again and they wanted to see her right away.

While in the exam room waiting on the doctor, Callie stopped breathing and turned blue. I screamed.  Craig screamed and the nurse rushed in, grabbed her from MY arms and began beating on her back.   Thankfully, she restored her breathing on her own and let out a little giggle.  We waited for the EMTs to arrive and they took Callie and me to the ER.

Once we were settled in the ER they started hooking Callie up to all of the monitors and an IV.  They kept saying they thought it was sleep apnea, which is common with premature babies.  They decided to admit us and they took us up to the 6th floor.

Once we got to her room, she had a coughing episode and again turned blue.  Nurses rushed in and told us not to be alarmed and she would be ok.  After another coughing episode, they intubated her.

For the next 36 hours they just watched and monitored her.  She slept a lot.  And we stayed by her side and refused to leave.

Come Friday morning, they to thought it was more than apnea.  We consented to a PICC line and for a spinal tap to test for meningitis. They also swabbed her for Pertussis.   Now we just had to wait for the results.  Doctors told us to hunker down and we would have results by Monday.

After her 11pm chest therapy, therapists had a hard time getting Callie comfortable again.  Several other nurses came to assist and some had looks of confusion on their faces.

We were asked to step out of her room and they came for a chest x-ray.  The resident doctor (and I will never forget his rude tone) came to us with a smile and told is “yeah it’s not good”.  We were confused and just watched them do what they were doing.

After about 40 minutes her room was filled with nurses, doctors and therapists from the unit.  Shortly after 1am Dr. Oranu came to us with tears and said “I’m sorry, there is nothing else we can do for your daughter”.  I literally felt my heart shatter inside my chest.

We watched from the glass walls and a few moments later, they all backed away from her bed, and Callie was lifeless.  Our baby girl was gone.  37 days old.  Gone.

The hours following her passing were miserable.  Family members came to say goodbye.  Nurses and staff came to share their condolences.  I felt like it was a really bad dream.

We went home and later that morning had to handle making funeral arrangements for our daughter.  A daughter who brought us so much joy.  A daughter who was still receiving congratulations cards.

Monday February 1 was her due date.  And where were we?  Heading to the funeral home for our daughter’s viewing.  The phone rang as we were heading out and it was the CDC.  They were calling to inform us that Callie’s lab results were in and that she did indeed test positive for pertussis….whooping cough.

The next few days, even weeks, were a blur.  We had so much sadness and guilt and shame we didn’t know what way was up.

Then one day, I received a phone call that forever changed my life, yet again.  It was Any Pisani, executive director of Every Child By Two out of Washington, DC.  She wanted us to share Callie’s story in hopes to bring awareness of Pertussis and the need for vaccines. (mind you, pertussis is a vaccine-preventable disease, but Callie was too young for her pertussis vaccine).

After a week or so of various calls with Amy we decided we would share Callie’s story.  If sharing our sorrow could save even just one child, it would be worth it.

Our story aired on Good Morning America in April.  It was overwhelming.  But the response was massive.  Support rang out and the idea that Callie could save other lives became heart warming.

Amy gave me the title of a parent advocate.  A voice that could save lives.  Spread awareness.  Make a difference.

Nobody grows up thinking “oh I’m going to be a vaccine advocate when I grow up”.  Sometimes you just have to roll with the flow and do what you feel is the right thing.

Joining forces with ECBT and the Indiana Immunization Coalition (IIC) has changed our lives. They have given us a platform to share the importance of vaccines.  The importance of cocooning your child with only people who are up-to-date on Tdap vaccinations.

We’ve been able to share our story countless times.  TV/radio interviews, local and national news programs.  Live CNN interviews and press conferences in Indianapolis.  Dr. Richard Besser even used Callie’s story in his best selling book…..a freaking book with OUR daughter’s story!  Do you know how amazing that is?!?

I absolutely love traveling and sharing Callie with the world.  To attend conferences and stress the importance of vaccines and how Callie’s Wings are stretching each time we share her story.

We’ve even set up a non-profit organization named Callie Cares that provides toiletry bags to hospitals for parents staying with sick kids.  It’s our way to give back and keep her spirit alive.

Without EBCT and IIC, I don’t know where our lives would be.  Without being an advocate, I’m not sure I would be who I am today.

Being a voice for babies is my passion.  It’s my healing and my mission.  I will never stop doing what I do.  For the babies. For the parents who need extra support (or encouragement to vaccinate their kids).

I’m an advocate.  I’m a mom.  And this is my mission.

If you’d like to learn more about immunization advocacy, contact Hoosiers Vaccinate.

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