April 4, 1985 to October 5, 1988
It’s been a long time since I have been able to find the nerve to even look into anything about HIB meningitis. My 2-1/2 year old daughter, Carol Ann Kaiser died from it on October 5, 1988. She had been given the HIB vaccine on September 29th and on October 1st went into a coma and died 4 days later.
The vaccine they had given her had only been out for 6 months, and they were still doing studies on it. I remember about 3 weeks after she died, I got a card in the mail. It was a survey about the shot she had been given. I was so upset, I remember writing in big bold letters on the card that she died, and I mailed it back to them. In my mind, she had died from being given that shot, because just a day after she had been given it was when her symptoms started. I had called the hospital when she started running the 104 temp. They assured me that she only had the flu and to continue giving her liquids and tylenol. I remember calling the hospital back a couple of hours later, because I had put her in a luke warm tub to try and bring her fever down, with no luck. It continued to go up. The nurse was very rude to me on the phone, and insisted that she only had the flu. She told me not to bring her in because they would just send us home, and then hung up the phone on me. I look back now and realize that she had symptoms that never dawned on me. Like when I put her in the tub to cool her fever down, she kept lifting up her legs saying that it hurt.
After she died, I realized that when I put her in the tub it was like when your hands and feet are very cold and you put cold water on them, they hurt. Also, during the night she had woken up to go to the bathroom. I had heard a noise and got up to go check on her. I realized that her bedroom door was shut. I had asked my husband if he had closed it and he said no. I went to go open it and she was laying on the floor by the door and had urinated all over herself. She was crying and said that she needed to go to the bathroom. I took her into the bathroom to have a bowel movement. She was so weak that she couldn’t even hold herself up on the toilet. She had stated that she was thirsty also so I remember giving her some 7-up.
The next morning she seemed better, so I thought that the hospital was right and that she only had the flu. My husband and I were supposed to go to a wedding that day. I didn’t want to go, but Carol cried and said that she wanted to go to her Aunt Caren’s house for the day. She still complained of a headache, but her fever was gone. I gave her some tylenol. She vomited. It was strange, I look back on it now and wish that we had stayed home. Because when she vomited, she did not vomit any of the tylenol I had just given her. It was all the 7-up that she had drank earlier. And when she was done, I remember saying to my husband that she didn’t look right. She was sort of a blue color. But she still insisted on going to her Aunt Caren’s house. We did take her there, and I called several times to check on her. My sister-in-law had stated that she had eaten a couple of crackers and kept them down and that she had diarrhea, but other than that she was fine. It put my mind at ease.
The next call I made was after the reception. My husband and I had stopped at home first to change our clothes before we went to pick Carol. I remember my sister-in-law stating that she had just fallen back to sleep and that she was doing okay. By the time we arrived something had changed. My sister-in-law came running out to the car before we even stopped and said that she could not wake Carol up. I remember running into the house and trying to get her to wake up. My husband and I decided to rush her to the hospital. In our minds all we could think of was to get her to “our” hospital that we take her to and that we go to, which was about 30 minutes away, but we got there in 20 minutes. That was one of the worst 20 minutes of my life. Carol had seizures the whole way. When we arrived at the hospital they took us into a room immediately and asked me to remove her clothes. When I took her blanket off of her, I remember I almost passed out. Her legs and arms were a purple color. I remember them saying that we had to leave the room. They did let us go into a room across the hall. A few moments later a nurse came in with a form for me to sign for them to give her a spinal tap. A few moments later, I heard her scream. And to this day, I can still hear that scream. It haunts me. I remember going to the bathroom and just sitting on the floor crying and begging God for her to be okay. I also remember trying to bargain with God. I was 7 months pregnant, and though I know it would hurt to lose the baby, I offered the baby to God in place of my beloved Carol Ann.
A couple of hours later, I remember the doctor coming out and asking us to go into his office. He stated that he was just going to be very straight forward with us. He said; “you have a very sick little girl, and we don’t expect her to live through the night”. After that, it was like a dream world. I remember some things, and other things I don’t remember. She did make it through the night. They knew that she had spinal meningitis, but at that time they were not sure what kind. I remember we had to wait for the results, which they said could take 3 days. I do remember them saying that if anything were to happen, whether it be good or bad, normally happens within the first 48 hours. But nothing did happen. Good or bad.
But on October 3rd something miraculous did happen. I remember I was standing at her bedside and talking to her and my husband came up to me and said something. Carol responded. I remember she tried turning her head towards us. I remember stepping out of the way and telling my husband to talk to her. We both talked to her, asking her to try and open her eyes for us. I remember that she was trying really hard but just could not do it. So I opened her eyes for her, and she smiled at me! I told her that I loved her so much, and even though she could not talk because of the respirator, her lips moved and she said; I love you too mommy”. I was so excited! I thought everything was going to be okay after that. And for the first time since it all started I had a good nights sleep. Until about 6 am the next morning.
Both my husband and I heard the Code Blue but what was strange, neither one of us heard which room number it was. But somehow, we both knew it was Carol. I remember we both just started getting dressed, not even speaking, just getting dressed. And then the knock came on the door. It was the nurse. She took us to Carol’s room and stated that the doctors were working on her but we could wait outside. I remember I was shivering really bad. It made me angry because they thought I was cold and they brought me a heated blanket but I wasn’t cold at all. After they stabalized her, the doctor came and spoke with us to let us know what happened. They said that her corpuscles had opened up. They wanted that to happen, but not the way it did. They wanted it to happen slowly. It had happened to fast and her blood pressure dropped too fast. She was stable, but was deeper in a coma. I remember walking into the room after that, and looking at her with her eyes open and that blank stare.
To me, she had died then but we still talked to her. Later that afternoon, they did an EEG to check her brain waves because she had started bleeding on the right side of her brain. When the test results came back they told us that she had brain wave activity, but that they were slow, which meant that she had brain damage. The next day, October 5th, they did another EEG and a bunch of other tests. Our beloved Carol Ann was brain dead. We had to make the hardest decision of our lives. And at 6:30 pm on October 5, 1988 they took Carol off life support, and she died at 6:34 pm.
This is my story about my daughter, Carol Ann Kaiser born on April 4, 1985 and died on October 5, 1988 from HIB meningitis. Even though it has been 17 years, it still seems like yesterday to me. I still have anger, especially towards the nurse that took my call that night and with myself. I cannot forgive myself for not realizing ALL of her symptoms and for not taking her in that night, or even for not taking her to a closer hospital. And for the longest time, and maybe even still, I blamed the HIB shot they had given her. You see, I gave birth to a beautiful baby girl just a month and two weeks after Carol died. Traci was 6 weeks early, but was healthy. After Traci was born, the doctors talked me into giving her the HIB shot, insisting that it was not the cause of Carol’s death. They were giving it in small increments at that time, and not all at once like they did with Carol. So I did allow them to give Traci the HIB shots. But when she was 5 months old she came down with HIB. They caught it before it turned into meningitis. But she had the HIB infection.
I even thought I had given to her somehow because I was pregnant with her when Carol died. But they said that was out of the question. They were baffled as to how she got it, and said that if any of my other children got it thereafter, they would test my husband and I. But they had no idea how Traci had gotten it and just were thankful that she did not end up like Carol. I had two more girls after that who were also given the HIB shots, and neither one of them got the disease. I did hear that the hospital started using Carol’s case as a learning tool to teach their staff, and even some other hospitals in the area were doing the same. It does make me feel good that Carol did not die in vain, but I am still angry that she even had to die at all.