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Carter’s Story: Shannon Hegy shares her baby’s brave battle with a rare disease

Small But Strong

PROVIDENCE, R.I. (WPRI) – When my son Carter was just 2 months old… the unthinkable happened.

We were out to brunch when Carter started acting strangely. He was moaning, wouldn’t let us put him down and was burning up. We drove home immediately and took his temperature. It was 102 degrees.

Our pediatrician told us to take Carter to the ER. He kept getting worse and worse on the way to the hospital and could barely open his eyes. When Carter got to the ER, the doctors inserted a needle in his spine to test his spinal fluid.

It felt like someone had punched us in the stomach when the doctors delivered the news – Carter had E. coli bacterial meningitis.

The first thing I did was Google bacterial meningitis and immediately found mortality rates and that infants die from this, and my kid’s life just flashed before my eyes. I have a necklace that has Carter’s name on it and I started picturing having to tell people when they asked ‘who’s that?’ saying — ‘that was my son’ — not ‘that is my son’ — ‘that was my son’ because that’s what was going through my mind — that he has something that’s going to kill him.

Dr. Lee Polikoff is an attending doctor at Hasbro’s Pediatric Intensive Care Unit and cared for Carter during his hospital stay.

My husband, Matt, and I had so many questions when we first got the diagnosis – especially ‘was this our fault? Did he catch this because of something we did?’ Dr. Polikoff reassured us that Carter was just extremely unlucky and that the bacteria was already in his system at birth.

In fact, he says it’s something that happens in fewer than one per thousand live births.

“Bacteria that you naturally have in your body can leak across those structures, get into your bloodstream, and then cede your spinal fluid and your brain,” said Polikoff.

Carter was moved out of the ICU within two or three days and moved up to the fifth floor at Hasbro. He seemed to be doing much better, but nine days into antibiotic treatment, he suffered a seizure right in front of me.

His mouth started twitching, his eye started twitching, so I called the nurse – I screamed.

Dr. Sabina Holland is on the Infectious Disease Team at Hasbro Children’s Hospital and handled Carter’s case.

“That first day we saw him he was looking at us and smiling, and did really well,” Dr. Holland said. “To have a seizure nine days in was unexpected.”

“His brain was quite irritated from the E. coli itself,” explained Dr. Polikoff, “and the response of his body to that infection, so he ultimately developed essentially pus around his brain.”

Carter was moved back down to the ICU and put on anti-seizure medication. Once he was stable again, we were moved back upstairs. That’s when Carter really turned the corner and continued to steadily improve.

We turned the hospital room into our home and we made it through another two weeks. We found out after four weeks that they were going to let us go home. That was, aside from Carter being born, the other happiest day of our lives. We cried after Carter’s MRI when they told us ‘you can go home.’

We had no idea that Carter’s battle with this dangerous infection was far from over.

We were home for just 12 days when Carter spiked a 101-degree fever. We got to the ER, and they did the spinal tap, and sure enough – it was back.

Dr. Polikoff said the staff was devastated when they learned that Carter was back and the meningitis had returned.

“We were really so happy for [them] to have [him] discharged not only from the ICU but the hospital. To have him back — it was really frustrating and sad and demoralizing,” he said.

“He got an extended course of therapy the first time,” said Dr. Holland, “so to hear that he came back, after dealing with the sinking feeling in my stomach, was to really investigate whether there was a problem with his immune system, whether there was something anatomic or something wrong structurally that would have predisposed him to getting meningitis a second time. Thankfully, and frustratingly, everything that we tested for came back negative.”

The doctors believe the most reasonable explanation is that Carter had one or two bacteria still hiding in his brain that the antibiotics hadn’t penetrated.

Both times around, the first few days were really rough. When you have a baby who smiles constantly and is the happiest kid, to not see him smiling is heartbreaking. We would wait for that moment. and when he did [smile], it just lit up the room. For being such a tiny baby, and having wires all over his head and needles stuck in him all the time and having to be sedated for MRIs all the time, despite all of it — he’d smile and he’d laugh and he’d babble. I mean with the number of nurses that would come into our room because they wanted to see him, I used to joke that he was the most popular kid on the floor. He’s just the bravest, happiest little boy. Everybody always said to me, ‘I don’t know how you’re being so brave, I don’t know how you’re doing it,’ but I don’t know how he was doing it.

Carter was in the hospital for six weeks of antibiotic treatment the second time, before we were finally able to go home.

While he must be closely monitored to make sure there are no lasting effects from the meningitis, he has been hitting (and even surpassing) his milestones.

He turns 7 months old on Feb. 10.

I’m sharing Carter’s story because I want others to know about bacterial meningitis and to recognize the signs.

I also want parents to remember to trust their instincts. The doctors said Carter recovered well both times, in part, because Matt and I knew something was wrong and got Carter to the hospital immediately. You can always overreact, but you can’t go back in time and hope you did.

I also want to recognize the incredible doctors, nurses and staff who saved our child’s life, and the amazing organizations who helped us get through the most difficult time in our lives.

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

Providence

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