HIS•STORY

As told by Mom

Wednesday morning September 25th, 2024 at 3:00am, our 5.5 month of baby boy Cyrus woke up as normal for his early morning time of breastfeeding. He was eager to latch but would just fuss instead of actually sucking. I pumped a bottle when I noticed that he wasn’t nursing but he fussed with the bottle as well. Eventually, Cyrus went back to sleep for a few more hours and we got up around 6:30am to get my other son, Zod, ready for school - he’s in the 2nd grade. Cyrus continued to be fussy throughout the morning and seemingly refusing to eat. I dropped Zod to school and came back home with Cyrus. As more time passed I noticed that Cyrus continued to refuse to eat and that something was off. I noticed that it wasn’t that he refused to eat, he couldn’t suck or hold his pacifier in his mouth! I panicked because I thought maybe Cyrus had swallowed one of Zod’s tiny legos and was now in discomfort!

I rushed him to the ER and let them know that my son had possibly swallowed something. My husband, Andres, met us at the ER. I didn’t want Cyrus to go any longer without feeding so I pumped milk for him and began to give him drops of breast milk through a syringe because he could still swallow. Cyrus received X-rays and we found out that he hadn’t actually swallowed a Lego and his airways were not obstructed. We were sent home under speculation that maybe Cyrus just had a sore throat from an oncoming viral infection.

A few more hours passed! It’s not 8:00pm, Cyrus continued to be fussy and now hadn’t eaten for about 17 hours! I took him to a different ER because he just want himself. I shared again that my son might have swallowed something, he hadn’t eaten all day and had only had two wet diapers since 3:00am! The doctors wasted no time getting us checked in and his X-rays completed! Again, the X-rays came back and his airways were clear. I expressed that maybe he hadn’t swallowed something but my baby is not eating and this is not like Cyrus at all. By this time, Cyrus has lost his ability to cry - his cry went from a shriek to a moan and now to a simple cats meow. He had become very weak, limp in his movements and could no longer swallow. When the nurse tried to administer oral medication while in the ER, he would gurgle the fluids in the back of his throat but not swallow. The pediatrician attending to us decided to make a few phone calls.

The decision was made to admit Cyrus Thursday, September 25th at 4:00am. Once admitted and placed in a room, the pediatrician examined Cyrus then shared with us that she is actually very concerned. She explained to us that she believed Cyrus presented symptoms that are classic for Infant Botulism (IB). She hit the emergency alarm and said that we needed to be transferred to the Pediatric Intensive Care Unit (PICU) immediately.

My husband and I were in utter shock. I had heard of botulism while studying Microbiology, and I understood that it was rare! Once in the PICU, Cyrus’ symptoms continue to progress as he became weaker and weaker. No more than two hours after arriving in the PICU, around 7:00am Cyrus’ lungs began to succumb to the paralyzing effects of the neurotoxin produced by the bacteria Clostridium botulinum that causes the botulism. To have a fighting chance at living, Cyrus needed to be intubated and put on a ventilator for support and a feeding tube until tests could be run to confirm the suspected diagnosis. About 16 hours later, Cyrus received the antitoxin medication for IB called “BabyBIG,” and since has made progress. We have now spent 5 days in the PICU.

Currently, Cyrus is still in the PICU with lightly sedation due to the breathing and feeding tube. He has shown an increase in strength and awareness. Cyrus can wiggle his toes, has slight movement in his legs, he can lift his arms a little, lightly grip with his hands, move his head from side to side, his bladder and bowels are functioning well, and his will open his eyes when spoken to. Cyrus is doing better as the days go by but his recovery will be a journey as he works to regain his ability to breathe on his own, eat without a feeding tube, muscle strength, and coordination.

WHY DO WE NEED HELP

We will go to all extents for our dear son; however, there is a financial toll to our situation! During this time, my husband has had to take time off work but doesn’t have much PTO as he just started his job about a month ago. Also, in order to take care of Zod, we've had to drive back and forth to pick him up from school, bring him to the hospital to spend time as a family, then drop him off at a friend's every day. On top of that, there is the medical bill looming over everything.

So at this time we are asking abled friends and family for any financial assistance. All the proceeds go towards helping our family stay afloat during the hardship in our lives. We are so grateful for all the prayers and gestures of love that have already been poured out us. We love you all so very much and greatly appreciate the support

WANT TO KNOW MORE

What is Infant Botulism?

Infant botulism is a rare illness that occurs when a baby ingests neurotoxins from a spore-forming bacteria known as Clostridium botulinum. This neurotoxin is one of the most lethal toxins known to man and causes progressive paralysis. This illness is treated with a drug that consists of human derived anti-botulism toxin antibodies. Full recovery varies per child.

Symptoms Include:

Infant Botulism https://www.infantbotulism.org

Kids Health Infant Botulism https://kidshealth.org/en/parents/botulism.html

Medline Plus Infant Botulism https://medlineplus.gov/ency/article/001384.htm