Following is something I wrote shortly after my daughter died. I was only 25 (almost 26) at the time. I am leaving it exactly as I wrote it even though I may think differently about some things now and I also know a lot more medically. After the story I will update what is known about HUS (Hemolytic Uremic Syndrome) today.

On November 28, 1982 at 1:45 in the morning I woke up with contractions. I was very excited and nervous as I knew this would be the day I would bring my first child into the world. After 19 and 1/2 hours of labor, Kelly Elizabeth was born. She was beautiful.... not just by my point of view... by everyone's! The nurses called her "the baby with the eyelashes" as she already had long, dark lashes surrounding her giant, blue eyes.

Kelly was not an easy baby. She was very vocal right from the beginning. By 3 weeks of age she knew my husband, Bernie, and me from everyone else and usually cried if anyone else held her. She was also smart. She started walking at 8 and 1/2 months and talked well early.

The first 3 years she was quite shy and as a result I had a very close relationship with her. Around other adults she was usually glued to my leg but around other kids she became more outgoing. Shortly after she turned 3 we had our second child, a baby boy named Derek. She seemed to blossom after Derek's birth. I don't know if it was just her age or the fact that she now had competition, but she became quite friendly and outgoing. In fact, while my sister was taking care of Kelly while I was still in the hospital they went to Friendly's one day and she told everyone there all about her new baby brother and entertained the whole restaurant.

I now felt I had the perfect family - a wonderful, loving husband and a beautiful girl and a new baby boy. We were all in perfect health and so happy. I thought I was the luckiest person in the world even though there was a lot of sadness in my life in the past few years because my father had died and shortly after my mother had had a very severe stroke that left her in a vegetative state.

Then in August of 1986 a summer virus was going around that caused severe stomach cramps and bloody diarrhea. My two young nephews came down with it and were very sick for a few days but then got better. So when Kelly woke up on Thursday, August 14th, with bloody diarrhea I wasn't too concerned. I brought her to the doctors and he called it gastroenteritis and said she should be fine in a few days.

Well that whole afternoon she was in misery, going to the bathroom every 10minutes. That night I put her to bed and told her to try and get some sleep. I was exhausted myself between caring for her and a 6 month old baby. I was to find out later what the *real* meaning of tired is! Kelly didn't get any sleep. Bernie and I took turns staying up with her. Early in the morning she started passing just blood. I was getting very scared.

I called her doctor as soon as his office opened and he suggested we check her into the hospital, mostly to keep her from getting dehydrated. He told me he expected her to be much better the next day.

The hospital let me set up a cot right in her room so I could stay with her around the clock yet I still felt so helpless as I watched my little girl suffer so much and all without complaining (except to ask when she could go home). I wished there was something I could do to take away her pain. It was horrible to watch my little 3 and 1/2 year old push her IV stand into the bathroom every 15 minutes and then look up at me with those sad, big, blue eyes.

I was angry that they kept drawing blood from her. I felt she had enough pain without having to go through that. Saturday night she still wasn't better. Bernie stayed with her that night while I picked up Derek at my sister's and went home to try and get some sleep. I felt so guilty at leaving her there that I went to get her a present first. I was planning on getting her a book about being in the hospital when I saw Teddy Ruxpin (a talking bear). I remembered my sister-in-law mentioning that Kelly saw him on TV at her house and said, "I've been wanting him for a long time." I had planned to give him to her for Christmas, but then I thought if I was a sick little girl in the hospital what would I want - a book or Teddy Ruxpin???

So I rushed back to the hospital to give him to her but she was so sick she said she would wait until she felt better before she heard him. She never did. To this day he sits on my closet shelf. I don't know what to do with him. I kept saying I should give him to some poor little girl or a children's hospital but I haven't been able to part with him yet. (*Note - I still have him on a shelf in my room though he is a little battered from a puppy who got at him once by accident. I could just never bear to give him away or let anyone play with him.)

Well that night her rectum started prolapsing from her going to the bathroom so much. When I called Bernie at the hospital and found out I fell apart. I remember saying, "What if something else is wrong?" I felt so scared and sick to my stomach. I just had a sense that something was really wrong.

Sunday she seemed a little better. She was resting comfortably as they had given her a drug (Donnatol?) to settle her intestinal tract. I wondered why they hadn't done that before and was told the doctors don't believe in it today as they think it's better for the body to get any "poisons" out. But with her rectum prolapsing they felt they had no choice.

I prayed she'd bounce back and that we could go home on Tuesday. Monday Bernie went to work. A nurse came in and took more blood samples. Her doctor had also asked a surgeon to come take a look at Kelly. Early in the afternoon a nurse came in to tell me her doctor was on the phone. He told me he wanted to transfer Kelly to Children's Hospital in Boston. The surgeon's suspicions along with the lab results suggested she was developing what was known as Hemolytic Uremic Syndrome or HUS.

I was so shocked I didn't think to ask for any details. Only one of the nurses had heard of it and she refused to tell me anything as she said she didn't want to get me overly concerned. Well I was a basketcase. I kept going out in the hall to cry while we were waiting for the ambulance to arrive as I didn't want to scare Kelly. As I look back I know she must have seen right through me.

When we arrived at Children's I was briefly separated from Kelly as I signed her in at admitting. They were so wonderful there as they took only the most important facts. It only took about a minute but felt like an hour to me. I was so anxious to get back to Kelly imagining how scared she must be to be surrounded by strange people in a strange place and to be so sick.

Bernie and my sister, Janet, showed up shortly after. The doctors confirmed the diagnosis of HUS. We were told it is usually preceded by a summer virus with bloody diarrhea. The prostaglandins in the blood are affected and the blood becomes more sticky. It also affects the kidneys and 2/3 of the kids that come down with it need dialysis. We were told most kids do very well though a few do end up with chronic kidney problems and may need a kidney transplant. At the time I thought that was the worst possible outcome. They gave Kelly a good prognosis saying that both her age and her being a girl were in her favor along with good health and having very typical symptoms.

Kelly did end up needing dialysis. It was heartbreaking sending her off into the operating room to be set up for peritoneal dialysis. We had explained it all to her as simply as we could. We walked down to the operating room with her but when it was time to be separated from us she started screaming hysterically, "MOMMY!! MOMMY!!" And then, "DADDY!!" She was terrified and there was nothing I could do! I'm still haunted by that memory.

She came through it fine and by the next morning she was awake and chatting away with her nurse telling her all about her brother and new kitten. Things were finally looking up.

The hospital had had about 6 or 7 cases of HUS that summer. One little girl who was still there in ICU had had all kinds of complications. The doctors kept telling us not to compare Kelly with her as the other little girl was an exceptional case. At that time she had lost her sight and was partially paralyzed and had been close to death a few times. Since the doctors told us not to compare I never expected Kelly to have any problems.

Since they kept needing to draw blood and Kelly's veins were becoming a mess they decided to put in a central IV line in her neck. We wanted to stay while they put it in. They were having trouble getting it and made us leave. (I was inexperienced at all this back then. I thought I had to do what they said. Now I would never leave.) We could hear her crying for us and begging us to come back. It tore right through my heart. I knew she just couldn't understand why her parents left her in the hands of strangers who were hurting her. They finally got it in and I thought at least she wouldn't have to go through getting stuck with a needle any more.

On Thursday I left the hospital to run home, check on a few things and get some clean clothes. Bernie stayed at the hospital with her. When I came back I found out there had been a incident while I was gone. In Children's Hospital ICU parents were allowed to be with their kids 24 hours a day except during shift changes. Then we were asked to leave and allow the nurses to fill in the next nurse on what was going on. They usually sit right outside the door so the kids can't hear their cases being discussed. The walls are glass so you can see in the rooms. Kelly had been really good and hadn't been messing with any of the stuff hooked up to her but while the shift change was going on she ripped her central IV line out and started bleeding heavily from the sight. She ended up losing quite a bit of blood before they noticed as she didn't make a noise. They ended up having to give her transfusions to replace the lost blood. I went in the bathroom and started vomiting when I found out. I was so shook up. Then they gave me her pillow as it had gotten soaked with blood. She had been using her own pillow from home. She loved it. It was in a fluffy kangaroo case. I went in the bathroom to try and rinse the blood from it. There was so much in the actual pillow that I ended up throwing it away and just trying to save the kangaroo case. It's a gut wrenching sight to watch your child's blood pour down the drain in the sink. I'll never forget it.

But the next day she started acting "funny" - seeing things that weren't there and babbling. Then we noticed she wasn't using her left arm much and kept looking to the right. Then we noticed she didn't seem to be seeing us. The sent her for a CAT scan of her brain. It showed no problems. Then they did an EEG, which showed some damage on the right side of her brain (which affects the left side of her body). We were still told not to worry as at that point it was all reversible. (The other little girl ended up getting her sight back and the use of her body and only had slight motor and memory problems.) That day Kelly also passed a whole bunch of giant dark blood clots and that scared me.

Kelly had been thirsty but couldn't have any more to drink as she had started vomiting. She knew what you'd tell her when she asked so Friday night, the 22nd, she said, "Mom, my stomach is better and the doctor said is was OK to have a drink so I want some coke!" The nurse finally said she could have some ice chips. We got her sitting up and gave her a spoon and a cup of ice. She insisted on "doing it by myself!" even though she could barely move her left hand. She had always been very determined and independent and this gave me a lot of hope as I knew she would fight this thing and get better.

By the next morning she was just about out of it. They sent her for another CAT scan and this time it showed some "infarcts" on the right side. What happens is... because of the increased stickiness of the blood it can form clots or infarcts in the brain and the area around it then swells. They said all we could hope for was no change the next few days. Then hopefully she'd get better as the swelling went down.

Kelly was put on a respirator and given the drug, Pavulon, that would paralyze her, all to increase oxygen flow to her brain. They also started her on plasmapheresis where they replace her plasma with new plasma to hopefully decrease any chance of more clots.

Sunday things seemed to be the same. On Monday her kidneys started functioning again and the doctors thought of taking her off dialysis! By this point she was surrounded by machines and Bernie and I both recall the nurse saying that as she got better the machines would start disappearing. How we looked forward to that! She hadn't passed any more blood and we thought things were really looking up!

Tuesday morning one of her pupils became fixed and dilated. We were told this was very serious. It meant her brain stem, which controls involuntary body functions such as breathing and heartbeat, was now affected. I was really scared but still had hope. After all, look at all the other little girl(Jenna) had gone through. When I mentioned this I was told not to compare her with Jenna. Kelly's case was different. Somehow different had gone from being better to being worse. Tuesday afternoon as I was checking her eyes for hopefully some positive sign I found that her other pupil was now fixed and dilated. My whole stomach just dropped. I knew it was bad and I was terrified. Soon after a group of doctors asked to speak with us in one of the lounges. I didn't want to go in there. It was the lounge they always used to tell people bad news. As we had been there for over a week now we had witnessed quite a bit. I really did not want to go in that room. Somehow I thought if I could just stay out of it I could keep the bad away.

Unfortunately we had no choice and it ended up being worse than I had imagined. We went in and sat with a whole group of doctors. They told us about Kelly's other eye being fixed and dilated. They told us her situation was very grave. There was nothing more they could do for her. They said they didn't expect her to make it through the night. We were shell shocked.

We planned to spend the night sitting with her. My mind and body was totally shot by this point. I had not really slept for close to 2 weeks. I sat there staring at Kelly and watching the monitor for her heart rate and blood pressure. Around 11:00PM with no change the nurse suggested we go lay down in the parent's lounge. At first we resisted but finally we did after she promised to come get us at the first sign of any change. I laid on the cot in the parent's lounge all night long listening.... listening for the footsteps of the nurse as she came to tell me my daughter was about to die. They never came! She had made it through the night! Maybe the doctor's were wrong! Hope started to resurge. Maybe....

OK. Back into that horrid little room. The news was still very bad, in fact, worse. The doctors told us they had done all kinds of tests and she didn't respond to any of them. They considered her "brain dead". I asked if there was any chance at all left. They told us there wasn't 1 chance in a million for her. They suggested we take her off the respirator. (She couldn't breathe without it now.) Bernie and I had discussed this before. After seeing the other little girl, Jenna, and what she was like when we first saw her and after seeing what happened with my mom and how she laid there suffering with no hope we both felt there were a lot of disabilities where life would be worth living but at a certain point it was better to be dead. It was nice that we both felt the same way. We discussed Kelly's situation. The doctors told us the damage was irreversible. We both agreed we didn't want her living as a vegetable, kept alive by a machine. We would do as the doctors suggested even though we were afraid it would kill us, too.

We asked about donating her organs but because of the type of illness she had they couldn't use any of them except possibly her eyes. Her eyes!?!?! Not her eyes! Kelly had the most incredible eyes I had ever seen. Her eyelashes were unbelievably long and thick and dark. Her eyes were so big that sometimes when she slept they didn't close all the way and they were the prettiest shade of blue. We had never gone into a store or anywhere for that matter that at least one person didn't comment on them. It had gotten so bad that because of her shyness she would go through checkout lines with her eyes closed so people wouldn't comment on them. I was torn. As much as I didn't want to see them wasted and knew how wonderful it would be for someone else to have them, I just couldn't part with them. I know it was selfish but I still just couldn't let them go. Her heart, her liver, her kidneys... yes. But her eyes? No.

The doctors wanted us to go in and hold her while she died. When they first said it, I was horrified! How could I hold my daughter and watch her die??? Then I thought... of course I want to hold her and be with her her last few minutes. So Bernie and I went in and took turns holding her, stroking her, talking to her and telling her how very much we loved her while she died. It took 25 minutes. It was the longest... and also the shortest 25 minutes of my life. At 10:50 AM on Wednesday, August 27th, 1986 my beloved first born child was pronounced dead. She was 3 years, 9 months old. I will forever miss her.

*NOTE

HUS has since been found to be connected to the bacteria E Coli 0157.H7. This bacteria can be found in raw meat and hamburger is a common source of contamination because the meat is ground up so the bacteria can be found all through it rather than say a piece of steak where it would just be on the outside and easy killed off when cooked. It is also found in unpasteurized milk and juice and in apple cider. Once someone is sick they can pass it on to others from unwashed hands etc. To find out more about it check out the following sites:

http://www.loisjoygaller.org/hus.htm

http://www.cheori.org/cpkdrc/hus.htm

http://www.cdc.gov/ncidod/dbmd/diseaseinfo/escherichiacoli_g.htm

http://www.medstudents.com.br/pedia/pedia5.htm

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