—Now His Devoted Mom and Dad Are Fighting Back

Q: Kayla, tell us about the tragic loss of your son, Grayson, to hemolytic uremic syndrome caused by E. coli poisoning. 
A: On Wednesday, August 10, 2016, Grayson woke up and began vomiting and had a bad bout of diarrhea. The next day, he suffered the same symptoms. My husband, Brent, and I just thought he caught a little bug. We weren’t too worried. We kept him comfortable and figured he’d feel better soon, but we took him to the pediatrician just to be safe. There he was diagnosed with stomach flu.

But, Friday evening he got worse.

Grayson was feeling very uncomfortable and in pain. We thought we’d see how the night would go and take him back to the pediatrician first thing Saturday morning. Later that evening, though, he was up with persistent pain—and we noticed blood in his stool. Saturday morning we visited our pediatrician and, with Grayson’s constellation of symptoms, we were advised to head straight for Indiana University’s Riley North Hospital for Children in Carmel, IN, near our home.

While at Riley North, they gave Grayson fluids, did chest and stomach X-rays/ultrasounds, took a stool sample, and tried to keep him comfortable. But our little guy was in serious pain. And the diarrhea was constant—Grayson was going every 10 minutes through the night.

The doctors had a hard time determining a diagnosis. We were first told it could be intussusception, a condition in which the intestines fold into themselves and cut off blood supply to affected parts. Next, they said it may be Henoch-Schönlein Purpura, which causes inflammation of the blood vessels.

With no definitive diagnosis, and as we watched our sick son get worse by the minute, Brent and I were extremely frustrated and scared.

On Sunday evening, we were transferred to Riley Hospital in Indianapolis where a pediatric surgical team would be ready to go if needed. Before we left, though, they did another ultrasound and discovered his appendix was enlarged.

Still in a great deal of pain, Grayson arrived at Riley Indianapolis where they did another ultrasound only to discover that his appendix was NOT enlarged. Instead, we were told his colon was inflamed and colitis was the next diagnosis.

This was getting crazy. We were losing faith. And our little boy wasn’t getting better. Was colitis really the problem? Was there something else going on? We had so many questions and were worried sick.

Our worrying only intensified when they transferred us to the ICU. Grayson’s stomach was hardening, he was very irritable, and he wouldn’t let us touch him in any way because his pain was so severe.

Next came another diagnosis: Hemolytic uremic syndrome (HUS), a serious, life-threatening kidney disease. At this time, we also got word from Riley North that his stool sample had tested positive for E. coli (and we later learned from our state’s board of health that it was a Shiga toxin-producing strain—one of the most deadly types).

Our hearts sank.

This time, they told us, they were positive that HUS due to E. coli was what Grayson was suffering with. His pain was so severe now. Multiple doses of strong medication didn’t even cut the pain. This was agonizing for us to see. Brent and I felt so helpless.

With HUS, Grayson’s kidneys weren’t functioning normally so dialysis was ordered for the following day (Monday), along with surgery first to put in a central line for dialysis. This would give his kidneys and body a chance to rest.

While we sat with our sweet Grayson on Sunday night, they inserted a  nasogastric tube, which helped release tons of fluid and softened his tummy. After the fluids were released, we saw glimmers of hope when Grayson started to talk more and watch some YouTube videos. And his pain had decreased dramatically.

We felt like we had finally turned the corner and figured Grayson would be getting better.

Next, doctors told us they wanted to sedate him and put in a breathing tube so Grayson could relax and rest before his surgery the next day. This seemed to be working wonders for some of his vitals—specifically blood pressure and heart rate, which had been extremely high (due to HUS). Once sedated, his blood pressure went down, his heart rate steadied, and his oxygen level was perfect.

But, after a few hours with the breathing tube in, his hemoglobin dropped from normal to nearly zero. And the doctors couldn’t get his heart to pump on its own.

Grayson’s life was hanging by a thread at this point.

20+ doctors and nurses descended around Grayson doing CPR for almost two hours.

But our precious baby boy was gone.

They couldn’t save him.

Grayson passed away on August 15, 2016 at 4:30 am after just five days of sickness and less than 10 hours in Riley Hospital’s pediatric ICU.

Q: From a food safety standpoint, do you feel there’s anything that could have been done to prevent Grayson’s death? How about medically?
A: That’s tough because, unfortunately, we don’t know where Grayson contracted his E. coli infection.

It could have come from an animal or food, but we aren’t sure. In the days leading up to his illness, we visited our state fair where we were around animals, ate at a few restaurants, and enjoyed food prepared at our home, too. So, it’s very hard to say just where the infection originated.

From a personal perspective, I feel we did everything we could as far as food safety goes. I’ve always been very diligent about making sure all of us wash our hands after touching animals and that our food is handled and cooked safely at home.

But, tragically, even one little mishap somewhere along the line in the food industry can doom a darling baby like Grayson to his death.

Now, from a medical standpoint, looking back I see there are a few things that could have gone differently to help my Grayson have a better shot at living through this nightmare.

But, before I get into that, I want to say the medical team that cared for Grayson was one of the best. They were extremely caring people with huge hearts who cried with us when Grayson died. And, during the entire time he was treated at Riley Indianapolis, they never left his side. I truly feel that, based on the knowledge they had, they did everything they could to help Grayson.

I’ve played it over in my mind a hundred times … could one thing in particular have made a difference and saved Grayson’s life? I often wonder this: because of the time it takes for a lab to process a stool sample, if we had gone in right when the diarrhea started, and a stool sample was ordered sooner at the ER (or even the pediatrician’s office), would results coming in sooner have given us the chance to catch it earlier, start him on dialysis, and give him more effective treatment?

I’ll never know, and these questions haunt me when I think about them.

Q: To other parents of small children like Grayson, what is your #1 recommendation for how they can keep their children safe from foodborne illness and/or E. coli infection?
A: Stay on top of food recalls!

You can sign up online here  and get emails directly to your phone.

Also, I’ve got a list here of some of my top tips:

• Wash everyone’s hands properly with soap and water when you’re around animals. Do this IMMEDIATELY after touching animals at a zoo (including aquariums/reptile petting zoos). Keep hand sanitizer handy, too—this will help for a short time until you get to a sink (but just know hand washing is absolutely needed ASAP to kill bacteria).
• Don’t drink unpasteurized juices or raw milk.
• Make sure little ones don’t drink pool water at hotels or backyard pools.
• Wash your hands after using the bathroom and teach your children to do the same while they’re young. We do this with our 10-month-old multiple times a day. She’s crawling on the ground and constantly has her hands in her mouth.
• Take shoes off at the door. You never know what’s lurking on the bottom of your shoes that can spread germs inside your home.
• Clean strollers after visiting fairs or places with animals.
• If your child has diarrhea at a young age, ask for a stool sample to be tested for coli. It’s the only way to check and begin treatment as early as possible if that’s what your child has.