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Life after Infant Botulism

The large gaps in posting on this blog illustrate beautifully the fact
that despite Infant Botulism putting our life on hold for a period of time,
 life does indeed go on.
Baby T (now best known as Big boy T) is now 2 years and a few months
post-diagnosis and treatment.
He is fabulous.
He's tenacious, vivacious and bursting with energy.
Most parents I discuss IB with are concerned about future health problems which may result from their child having once recovered from IB.
So far we've encountered no issues (knock on wood).
We became captured by this little-big guy long before
Infant Botulism made him one in a million.

I often hear from families who are grateful to see how well Baby T is doing.

Big boy T is here to show you that he is absolutely fine.
And your baby will be too.

I am truly thankful for having the opportunity to share many botulism recovery stories so that other families can have a rough idea of what to expect.

Expect many extremes..sadness, joy, defeat and triumph.
And be grateful for a full recovery.
Because recover they do.


Baby T's Story, Chapter 20- A year after Infant Botulism

Over a year ago Baby T’s journey with Infant Botulism began.
IB Dad and I often remark how it feels even further away now
because our baby has evolved into a busy boy-toddler.
 The more he blossoms, the further away the memory of his battle with IB becomes.
I try not to dwell in the worry of being a parent as it’s very easy to become consumed with the past.
I’ve found that many parents have their own emotional challenges to overcome
after witnessing what IB does to their child.
Knocked down temporarily
When your child is in the thick of it, you feel as though things will never get back to normal.
The worry that your baby will be forever changed or effected negatively it tangible and hard to shake. 
But, it does get better. Babies are amazing and resilient.

Being a toddler is exhausting !

 IB is awful, but a year later our perspective is more of luck and gratitude.
Luck being, IB is treatable, and the survival rate is high.
Gratitude for BabyBIG, and the support of the IBTPP
as well as the many friends and family we have who supported us and continue to do so.
Our infant son, Baby T, became critically ill at 7 months old.
A year later he’s a walking, talking, falling, eating, nursing, on the go,
inquisitive, smart, loving, completely normal and stubborn toddler. 
He has no idea what happened a year ago,
he’s too busy being focused on the joys of today.

Baby Gianni's Story~ February 2012

Baby Gianni's mother Rachael remembers his experience with infant botulism:

When our son, Gianni, was five weeks old, he became critically ill with Infant Botulism.
The morning of February 15th, 2012, Gianni was unable to suck on his bottle.
I could tell he was hungry, but I didn't know why he could not suck. I called his doctor immediately.
The best way I could describe his symptom to the physicians office was
that it was almost like he "forgot how to suck".
The doctor wasn't exactly sure what was wrong,
but knew it was something serious.
He had us sent in a Medical Response Team ambulance to Akron Children's Hospital,
which was about an hour and a half away from our home in Pennsylvania.
The doctors were considering several illnesses in Gianni's case, 
so he had numerous tests done while he was in the hospital. 
They performed urine tests, blood tests, several MRI's and CT scans, three spinal taps, a test on the muscles called Electromyography, and an EEG scan on the brain.
A majority of the test were coming back negative, yet Gianni was becoming weaker and weaker,
to the point of not being able to move what so ever.
The second night in Akron Children's was the worst.
We were standing next to Gianni's bed as the neurologist came in to check him out.
As he scooted Gianni upward, 
Gianni quit breathing.
He was so weak that he could not hold his own airway open.
The nurse hit the "staff assist" button, and within seconds,
the room was filled with doctors and nurses.
That was the worst thing I've ever seen. I was crying hysterically.
Luckily the nurses used a bag valve mask to help save him.
The doctors asked us to take a walk for a little bit while they intubated him.
Gianni intubated at Akron Children's

The hospital began doing another test to check for Infant Botulism.
But unfortunately, the test needed a specific amount of stool to be collected and sent away,
and another symptom of Botulism is constipation,
so it was going to take some time before we would know for sure.
But as Akron Children's Doctors communicated with the California Department of Public Health Infant Botulism Treatment and Prevention Program they there were certain,
without needing test results, that Gianni had Infant Botulism.
So over-night a medicine called Baby Big was flown over from California to Ohio.
The medicine was immediately given to Gianni.
Within days, it seemed Gianni was slowly making progress.
He would slowly lift a finger or budge his leg. When I would get really sad and feeling helpless,
I would go over to him and tickle his foot because he would move his toes.
It gave me hope that he was going to get better.
Gianni was intubated for about three weeks.
Shortly after he was extubated, we got to leave the ICU.
And about that same time was when test results came back stating that
he did, in fact, have Infant Botulism.
Baby Gianni extubated and approx. 8 weeks old
I was adamant that the doctors to unplug his NG feeding tube, so that he would get hungry allowing me to feed him with a bottle to see how well his sucking ability was progressing.
I hoping he would be able to come home without the NG tube.
After much stressing to the doctors, they finally gave in and quit feeding through the NG.
And Gianni did amazing with his bottle!
When we left the hospital in March, Gianni was good as new.
Baby Gianni at approx. 4 months old
We will probably never know how he got Infant Botulism,
but all we DO know is that he's such a happy, healthy baby now.
Gianni at 1 year old (nearing one year post-IB)!

One year later, a Mother Remembers..

When I was creating the infant botulism blog and requesting stories from other families, I received an e-mail from Cherie G. containing a letter she had written to her daughter, Ayden, when she had contracted IB in November 2011.
Now one year after Ayden's diagnosis, she has written an update which I think will speak to all parents of children who have survived IB. Thank you Cherie for sharing once more!

"One year ago, I experienced the most earth-shattering event
and was introduced to a disease I didn’t even know existed. 
Although I have the most beautiful, HEALTHY daughter anyone could ask for, I have found that the healing process is quite unique. 
Not the physical healing, although that came with its own challenges,
but the emotional process. 
Not a day goes by that I don’t think about Ayden’s illness. 
Not one minute goes by that I am not overwhelmed with gratitude
for her health and for the prayers that embraced our family. 
I am appreciative to the doctors who devoted their careers to studying in California about Botulism and indebted to every professional that was involved in her case. 
I am humbled by other stories and families
who have gone through this. 
I am in awe of the support that pours out to this day.
I am connected to those mothers in a way I cannot explain. 
I feel their devotion, their fear, and most of all their love.
I am thankful for those who allow me to talk about it from time to time,
and those who hear about it often. 
Although I didn’t suffer the loss of a child,
much of the grieving process is still the same. 
I have good days and days that are filled with the “what if’s”. 
In some way or another I have experienced guilt, denial,
bargaining, depression, anger and now acceptance. 
I have accepted that this was a chapter
in our lives that while not desired,
brought Michael and I closer together, reshaped our faith,
and reaffirmed that our love knows no end for our daughter. 
We saw how those who loved us reached out to us and how people we had never met loved our child. 
I cannot erase from my mind the picture of a 5 month old,
lifeless baby strapped to a gurney being put into a jet. 
I cannot erase the beeping machines and
the sleep deprived hours in the dark,
watching neon letters scroll across screens. 
Time and support have healed so much
and we are beyond thankful to have our daughter with us. 
It’s a good and healthy reminder that life is precious. 
Ayden is precious. The meaning of Ayden is "fire” or “little fire”. 
She truly is our little fire! She is precocious and full of life! 
We still love looking at her, the same way we did
for hours when she was new. 
Not a day goes by that we don’t look at each other
 with a huge smile and say,
“did you see that?” 
I know that we will always feel this much joy
and excitement in raising Ayden! 
We will never stop getting excited about who she is
and what she does. 
She is the fire in our hearts. 
Today, we celebrate one year of health
and the year of healing that has taken place. 
We are thankful to those who have had Ayden on your hearts
and are so blessed by our blue-eyed, crazy curls, wild-child!"

Baby Colin's Photo Collage

One year ago (October 2011) Baby Colin was diagnosed with IB.
His mother, Kat documented his journey with photos* and wished to share it.

Baby Colin was 10 weeks old when he contracted infant botulism
Kat states:     
"He was so weak I couldn't picture him ever walking,
but I would see pictures of the other babies and it gave me hope." 
(Click photo to enlarge)
Colin is a healthy happy +1 year old now!

Thank you for sharing your collage with us Kat.
*these photos were posted with Kat's permission,
please do NOT use any photos without permission.

Baby T's Story, Chapter 19- Recovery Pt. 3-Six months later...


What has Baby T been up to?

ALOT actually....

The big guy turned one last month.

We had a low-key celebration due to his tendency to get a bit antsy around big crowds.
I included honey sticks in the favor bags for the young guests (all were over 1 yr of course).
He received (and tasted) a birthday card from the
Infant Botulism Treatment and Prevention Program (thanks IBTPP Staff)

A rare (and tasty) card indeed!

Next week will mark the six month anniversary of Baby T being diagnosed with infant botulism.

IB Dad and I often remark on how "long ago" T's hospitalization feels.
Since our last update in April, there have only been 6 appointments!

Less appointments mean more time to enjoy summer.

Hanging out with sister

We took a family vacation, Baby T's first long car trip.

"Point and wait for explanation"

We visited the beach and he got sand in every nook and cranny.

Our summer has included a myriad of good times
though we're mainly celebrating our excellent health!

Baby T is morphing into a boy-toddler right before our eyes.
He is more determined to get into mischief and
is NOT easily distracted/redirected when he has a goal in mind.
He can go from cuddling to yanking our hair/pinching 
then back to cuddling; all within one breath.
We love how mischievous he has become.

Ironically, I ran into the ER dr who was stumped by T when we initially brought him in. He was happy to see our guy doing so well. He confessed that he was keeping tabs on him throughout his hospitalization and exclaimed how  Baby T's case has since been discussed often within the medical community.  He clarified that he wasn't pondering discharging us (as I had previously thought) but was genuinely stumped as to what was occurring with Baby T (but was certain it was not looking very good).  He expressed gratitude for the PICU staff who had an inkling that they were dealing with Infant Botulism in this instance.

Baby T saw his neurologist in May and she was impressed with his progress and doesn't need to see him again until he is walking (or 18 months, whichever comes first).

At his 1 year check up, T's pediatrician was happy to see how well he has recovered.

"I thought these bracelets were a thing of the past! Get it OFF"

We troubleshooted some ways to help T's constipation (which can last for a full year after diagnosis).
His weight gain stabilized after some minor losses
(as his pediatrician so eloquently stated, "he is no wilting flower")
Baby T continues to nurse frequently and dabbles in solid foods
but doesn't seem terribly interested in eating solids very often.

 Today Baby T stunned his physical therapist!
Not only is he crawling like a champ now...
He is on the VERGE of walking!!

"Look out world, here I come!"

He really turned on the charm for PT and while she sure does
love to see Baby T, she doesn't need to see us for 6 weeks!

There are times when I wrestle emotionally with what happened to him.
In communicating with other 'IB Moms' I've often been warned
of feeling these emotional aftershocks for some time.
The hand sanitizer at his dr's office takes me back to the days where
I was required to wash my hands even if just to caress his cheek.
I donated the frozen breastmilk that was pumped during his hospitalization
and while doing an inventory of the stash, certain dates took me back to the PICU pump room.
The sessions where: stress would zap my supply, in the early morning where I'd be exhausted but then shocked into reality and have trouble leaving his side, and when I would rush through in order to return to him as the paralysis wore off and his smiles returned.

I'm so grateful that he won't remember everything that he went through.

His bright eyes have always seemed to be reassuring me that everything is going to be just fine.
It feels so good to move beyond his first year.

And what an amazing year it was.

A message from an infant botulism mother..

Below is a message written by Jenny,
who's daughter, Allison, recently contracted
infant botulism at the age of 2 1/2 months.

It is so unlikely that your baby would ever get Infant Botulism, but I feel the need to pass along info on the early signs and symptoms since undiagnosed Infant Botulism has been linked to SIDS.
It's scary to think that up to 15% of SIDS deaths could be undiagnosed Infant Botulism.
Know the signs and symptoms of this scary illness to save a life. 
They always say never feed infants honey until they are over
the age of one because of Botulism poisoning.
 Botulism is also a spore that lives in the soil, and is very common in California.
When the dirt is disturbed through farming, or construction,
the spores become airborne and are ingested by the infant.
If their intestines have the perfect environment, the spores colonize releasing a toxin.
The toxin paralyzes the infant’s muscles to move,
but most importantly the muscles used to breathe, so without intervention, they just stop breathing.

Acute symptoms can come on very quickly as in a matter of hours or can be as long as days or weeks. We barely had three days from the time I knew something was wrong
until a pediatrician was able to diagnose the illness and rush our daughter to Lucile Packard Hospital.

I hope this doesn’t add to the list of things to worry about,
as this was never on our list, (but SIDS was), and IB is so rare,
but it’s so important to know the early signs to potentially save a life.

The intention is to create awareness and spread the word to any family
that has an infant under the age of one.
This is an illness that I believe goes undiagnosed, until it's too late.

The Infant Botulism and Treatment Program is an amazing organization
that helped save our daughter's life.
I'm so grateful, and now determined to share our story to help other
families recognize the symptoms early.

To me, our daughter never seemed sick, she just started not being able to do
normal 2 1/2 month old baby stuff, like hold up her head, or nurse...
she always seemed to get frustrated and gag while trying to nurse.
She never had a fever, runny nose, congestion, or a cough.
She was constipated, very gassy, had a weak cry, and seemed very sleepy.
A day later she was not able to move her arms or legs, and as the day wore on,
 I was increasingly worried about her shallow, quiet breaths.
By the time the ambulance came she could not open her eyes…
she was almost completely paralyzed.

 It always felt like a race against time to figure out what was wrong with her.
 We spent 7 days in the PICU, 3 days in General Pediatrics, and 9 days with a feeding tube at home.

Thank goodness she was diagnosed early enough to receive the BabyBIG
and, in time, will make a full recovery.
I can say we are happily moving forward.
Thank you to the IBTPP… we will be forever grateful for the good work
you do in saving children's lives and educating the public to keep our babies safe.

Written By Jenny M.