It was June 1987, when my husband and I realized something was wrong with our six-year-old son, Jimmy. It had been days, and the vomiting and diarrhea just wouldn't stop. But, every time we went to the doctor's, they just kept sending us home. They told me it was just the flu and that I should keep giving Jimmy fluids.

I was a young mother back then, so I just completely trusted what they said. At one point one of the doctors even suggested that I was overreacting by bringing Jimmy in again. On the 5th day of his illness, Jimmy started to hallucinate. He didn't know who we were. Not me, not my husband or his siblings. He kept telling us we had to get the truck out of the way. So, of course we took him back to the doctor again. This time we got lucky. There was a neurologist in the office that day and he realized that Jimmy was having neurological problems, so he ordered x-rays, blood work and a CT scan for Jimmy's head.

When the blood work came back, I think everyone was in shock. Jimmy was in renal failure. His platelet count was dangerously low and his red blood cell count was down too. The doctors told us they would have to immediately transfer him to a Rhode Island hospital. I called my husband to let him know, but I still really didn't know how serious his condition was. I told him to stay home with our other kids. Meanwhile, Jimmy was deteriorating by the hour.

Later that evening the nephrologist told me that Jimmy needed peritoneal dialysis right away. But, they couldn't do it because his platelet count was too low -- down to 3,700. They started giving him blood transfusions and it took about a day and half to get him stable enough to do dialysis. It's really a horrific process. They put all this tubing in abdomen and you can see the belly grow. Jimmy was practically comatose at this point. All he did was moan and moan and cry. He did that constantly. He had all kinds of other problems too. He had plural effusions and had to have chest tubes. Then he started to get an outrageous fever and they were constantly checking sites for infections. He had to have a central line put in his neck.

Then, there were problems maintaining his blood pressure. At one point he actually arrested. They shocked him and his heart rate came right back. Every tiny thing that could happen was happening. Jimmy was very agitated through the whole thing. They had to sedate him. It was so hard to see him so agitated and irritated.

The worst part though was when he started seizing. His whole body was seizing and they put anticonvulsant medications into his IV. The doctors told us they didn't know what was going on, but they'd take him for the CT. That's when they found out he'd had a stroke.
The doctors told us they needed to have a meeting with us, and that we should call the family together. Eight physicians came to the meeting. They told us that HUS can be fatal and of the cases that were fatal, Jimmy was falling into that category. He had a 10 percent chance to survive. He had to have neurological surgery. They had to take the top of his skull off because of the brain swelling.

He was comatose for about 6 weeks. His body was contorted because his left side had been paralyzed by the stroke. His left knee was all the way up to his chest. We couldn't straighten it. There were more fevers, more blood transfusions and more seizures. After about four to five weeks, he started to slowly not get any worse. The blood transfusions were less frequent. The dialysis came out. Two weeks after that he woke up. That was when we started to realize what this had done to him. Brain damage is so horrific. His eyes were completely deviated to the left. He couldn't move them. He couldn't speak. His left arm and leg were locked in position.
On paper he was getting better. Everything started to level off, but now it was time to deal with the stroke. For that, we needed to go to an inpatient pediatric rehabilitation facility in Boston, Massachusetts. So, after 6 weeks of just wanting to go home, we were now facing six to nine months of in-patient rehabilitation.

My other children were suffering. They wanted to know where Mommy was. Where their brother was. Before we went to the rehabilitation hospital, I went home. My other son, who was 4 1/2 at the time was kicking me, hitting me and just generally mad as hell at me. And, he was really mad when he realized that I would have to go back. I talked to a social worker and she recommended that we bring them to see their brother. But they expected to see their brother as he had been. My son looked at the boy in the bed and said, "Mommy, this ain't Jimmy." Then he told me it was OK if I had to stay with Jimmy. He needed to see it to understand. It was really hard knowing that I couldn't be there for the other two.

So we made it to Boston and started Jimmy's rehabilitation at Tufts University. He had to have physical, occupational and speech therapy at least three times a day for 20-minute intervals. They put his left leg in a cast, and periodically they would recast it and each time, they would move it a little bit more. It took about 9 weeks of that before his leg was in the right position. We weren't sure if he would ever walk again.

Jimmy had to relearn everything. Gradually, he started to get his speech back. The one good thing is that in children, the brain will pick up for the parts that are damaged.
Eventually, I fought to have him released early. There were so many children suffering in that hospital. It was very hard to see that every day. I knew I could do his therapy at home. I'd been participating in it all along. So, we went home -- months after he first went into the hospital. It was a whole new beginning. We had to completely change our lives again. We still had to go to therapy three times a week and it was a 45-minute drive each way.

After a few months, the doctors fit Jimmy with a brace. Two years after this all began, Jimmy took his first steps again. He missed school during all of this and he had been a really bright first grader. James got home tutored, but after 4 months he wanted to go back to school.
He had to go back to first grade and he was now eight. He hadn't really grown since the stroke, so he still looked like he was six. Seeing him get on that special ed bus was really traumatic for me. Never, in a million years, did I think this was going to happen to my son. But, Jimmy didn't see me cry. And, he was so excited to be going back to school. He could only go back for a half day, because the full day was just too much for him. He did well in grade school, learned at much slower rate. He learned to reread and progressed more than they ever thought he would.
Jimmy continued to have problems with seizures. Seizure medications are a part of our life. He takes about 15 pills a day.

In 1991, Jimmy started to get tired all the time. The school was calling me, asking me if I let him stay up late. We ended up going back to half days. The doctors thought that the seizure medications were causing his fatigue, but they couldn't cut back on them. His liver enzyme tests were always elevated too, but they attributed that to the medication also. In 1997, I read an article about Hepatitis C and when they listed the symptoms, everything there was my son. He had gotten Hepatitis C from the blood transfusions that saved his life! This was a huge blow to us. We'd been through so much already. We've tried therapy for it, but Jimmy can't tolerate it. He may eventually need a liver transplant.

Today, you can tell by looking at him that something happened to him. He walks with a bit of a limp and he never regained the use of his left arm. His IQ will never be more than that of a 12 to 13 year old. But, Jimmy has a very strong spirit and he does everything he can. He builds model airplanes. He golfs with one hand and swims too. He can beat me and his brother at swimming. He deals with it a lot better than we do. He did graduate from High School.

For a while, Jimmy thought he would eventually get back to normal. It was hard for him to realize that this was not going to go away. What gets Jimmy through it is he goes to a center where kids are very severely disabled, where they will never walk. It helps him to see other people in worse situation. The whole ordeal has really helped us put our priorities in place. We definitely don't sweat the small stuff anymore.

Copyright Linda Deasley, 2002.

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