Jonathan in the ICU at Primary Children's with Infant Botulism

ABC4 was at my house last night doing a story on our baby, Jonathan, and his fight and victory over Botulism.

After living through the nightmare of botulism, I want all parents to understand how to protect their babies from contracting this disease.

About Infant Botulism

Infant botulism is very rare. Less than 100 babies are diagnosed in the U.S. each year with infant botulism and most babies recover fully. However, infant botulism has been linked to SIDS, with reports finding that up to 20% of babies that die of SIDS are actually found to have botulism poisoning. (Read an abstract of the report.)

Infant botulism poisoning occurs when a child ingests spores of Clostridium botulinum bacteria, which are found in dirt and dust and can contaminate honey. This illness typically affects babies who are between 3 weeks and 6 months old, but they’re susceptible to it until they are 12 months old.

The spores are usually harmless to older children and adults because their digestive system has matured and can pass the spores through the body before any harm is caused.

However, very young babies have immature digestive tracts and haven’t developed the ability to pass the spores. Once an infant ingests the spores, the bacteria germinate, multiply, and produce botulism toxin. This poison interferes with the nerves and muscles causing paralysis that can lead to the baby’s ability to move, eat and breathe. Scary Fact: Botulism toxin is the most poisonous substance on earth.

Protect Your Baby from Botulism

The best thing you can do to protect your infant from botulism is to keep him inside during wind storms. When you can see dust in the air, stay inside. Many cases of botulism are found where there is new construction and there is a lot of dust.

Also, avoid honey. Honey can contain botulism spores and should never be given to a child less than one year of age.

Jonathan and Mom in the PICU

Symptoms

1. The first thing we noticed was constipation. His GI had become paralyzed and could no longer function.

2. Approximately 4 days after the constipation began, he seemed disinterested in food. He would not take a pacifier and would not breastfeed or take a bottle. Originally we thought this was due to constipation or an earache. However, this was because he could no longer swallow.

3. He became fussy but had a very weak cry. This was because he was hurting and also very hungry- he hadn’t eaten in 24 hours, but was losing the ability to cry due to paralysis.

4. No facial expression. His facial muscles had become paralyzed, so he couldn’t frown, blink, crinkle his eyebrows, etc.

5. No eye movement. His pupils could not dilate or constrict, even when we turned on a Mag-light flashlight and shown it in his eyes. He was completely blind.

6. Difficulty breathing. His breaths became very shallow, but because his chest and face were mostly paralyzed at this point, his nostrils didn’t flare and his chest didn’t rise and fall rapidly. Instead the breaths were shallow and rapid.

Our Story

The morning of Saturday, June 13, began at 5:00 a.m. with Jonathan lightly crying. I got him up, changed and fed him. He ate well and enjoyed kicking in his bouncer chair while I worked. I remember humming along to the tune as it played. Around 9:00 he ate again, but wasn’t very hungry. This would be the last time our son was able to swallow. We noticed he wasn’t hungry the rest of the day and milk would spill out of his mouth when we would attempt to feed him.

At a company party that afternoon, Jonathan was a little fussy, but I didn’t think much of it. He wasn’t coughing, didn’t have a fever, and seemed a little tired, but normal.

I kept offering him a pacifier, but he was disinterested. By 11:00 p.m., our son was weak, could hardly cry, his breaths were shallow and and he couldn’t see.

Jonathan breathing for the first time

We rushed to American Fork emergency room. After becoming very verbal about the long wait, a kind mother insisted that we take her turn and told the ER to open immediately for us. A physician saw Jonathan and quickly dismissed our concern. The dr. diagnosed Jon with croup, ordered cool mist, a steriod, suctioning, and sent us on our way.

Three hours later our son was almost lifeless. He could no longer cry any louder than a whisper and could barely breathe. Tim was frantic and held Jon while I quickly dressed and we rushed out the door.

Tim has always been a fast driver, but when we passed a cop and his lights turned on, I knew he was really flying. I was scared that we wouldn’t make it to the hospital, and burst into tears when Tim had to pull over. The kind officer ran to my side of the car when he saw the babe on my lap and my hysterical crying. He announced, “It’s OK, I am a medic. Tell me what is happening.” Before we knew it, Jon and I were in an ambulance and were rushing to the ER.

A team of doctors and nursing staff were waiting for us, and quickly began evaluating and treating Jonathan. I was on the phone every few minutes with my family providing updates like, “they have called life-flight,” and “Jonathan’s pediatrician is here now, and is crying.” The doctors used words like, “serious” and “concerning.”

Later, we learned it was a miracle that Jonathan made it to the hospital and lived.

I remember driving with Tim (who was again, speeding) following life-flight to Primary Children’s. So much of the next few days are a blur. It took 3 days before he was properly diagnosed with infant botulism. He was paralyzed, blind, and couldn’t breathe without a ventilator.

Corinne holding Jonathan

After receiving Baby BIG, a $43,500 single syringe of treatment, he began showing signs of improvement.

Jonathan spent one month in the ICU, and a total of three months in the hospital. It took him two months before he could breathe without oxygen and 7 months before he could eat again.

Once we brought Jonathan home from the hospital, we faced entirely new challenges. We cried, hoped, prayed and patiently taught him to trust us, drink a bottle and become a baby again. Read the rest of his story and watch the ABC4 News report here.

Related posts: Blame it on the Frickin Contacts, and Frickin Mommyhood

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Barb Smith with ABC4 interviewed our family regarding our experience with infant botulism. Below is the video, and our story once Jonathan was allowed to come home.

Coming Home

When Jonathan was discharged from the hospital he was very weak, months behind in development, and distrusting of almost everyone, especially me. He had severe oral aversion and wouldn’t let anything near his mouth.

Because I moved into Jon’s hospital room during his stay, he associated me with the pain he had suffered. When I would try to feed or comfort him, he would arch his back and flex his entire body in fear.

Tim began working with Jonathan to teach him how to drink from a bottle and be a baby again, and I worked on slowly earning his trust.

While in the hospital, Jonathan suffered through intubation, a spinal tap, an MRI, Cat Scan, hundreds of blood draws, IVs, the placement of feeding tubes (that went up his nose down into his belly) a machine that forced air into his lungs creating an artificial cough, multiple gags, and numerous other painful procedures. It took us months to teach him that he was home and safe.

Tim researched how to overcome oral aversions and patiently worked with Jonathan for hours each day. I managed his feedings and stayed awake at night to be sure everything went OK. Because he was fed through a tube that went up into his nose and down to his belly, he had to be closely monitored. Babies that are fed this way (NG feedings) can easily displace the tube, or try to remove it altogether. If this happens during a feeding, the baby can aspirate (his lungs fill with liquid) and it can cause pneumonia or worse.

It was exhausting for both of us, but we were so thankful to have Jonathan home from the hospital, that it was worth all the work and stress.

Success with Feedings

Finally, after weeks of patient attempts, Tim was able to encourage Jonathan to drink a few teaspoons of milk. He continued working with Jonathan until he drank an entire ounce. This was a tremendous victory! It took weeks before Jonathan had the strength and desire to drink more than an ounce at a time, but eventually he did.

Germaphobes R Us

Now, we just had to keep him healthy. Because he was so weak, it was imperative that he didn’t get sick. He was diagnosed as immune compromised, and we were told to avoid crowds of people and “shared air space.”

Tim purchased air purifiers for every room in the home and we quickly became germaphobes. We didn’t go to movies, church, busy shopping centers, and avoided having people over. We even missed family events (including Christmas morning) because we couldn’t risk bringing home any germs or viruses to Jonathan. It was a long winter.

Happily Ever After

The good news? We made it! Jonathan is now healthy and happy. Our family is eternally grateful for all the miracles we witnessed during Jonathan’s battle with botulism, and all the support we received from our family, friends and employers.

Although I would never choose to repeat this experience, there were joys and times of gratitude that are so intense that the memories are sweet and beautiful. And even though I may not have been a super-duper sweetheart in the hospital (I gave the doctors and nurses an earful more than once!) I am also very grateful for the love and care he received from the staff at Primary Children’s.

A special shout-out goes to Tracey, Carrie, Kristin, Megan, Denese, Jessica, Dr. Osterling, Dr. Laarman, and Dr. Sakonju. I love you all to the moon and back!

Related posts: Blame it on the Frickin Contacts, Frickin Mommyhood, and Infant Botulism, a Frickin Nightmare