My daughter Makayla M. Schull lost her life to it. She was 10 months old. This is her story. She was born March 3, 2006. When I had her she was so beautiful and looked so perfect. There seem to be absolutely nothing wrong with her she was always smiling and happy, she was doing the normal toddler things and had an AMAZING personality and way about her.
When she was about 3 months old she started getting colds and sinus infections more than I thought a baby should. We took her to the doctors and they would always say "she will be ok it's only a cold or only a little sinus infection, take her home and give her plenty of fluids." They would give us antibiotics and tell us to use children's Tylenol. So we did. The fact that she was always getting sick had worried me but the doctors kept saying she is ok.
Well she would get well and she would be just as happy and outgoing as always but little things caught my attention. Her nose was consistently running and it had like an orange, yellow tent to it. Her eyes always bright but looked droopy and kind of dark underneath. But the doctors always told me she was fine and that her nose was like that because of the slight jaundice she had when she was born and that it would go away. So again didn't worry too much.
On January 12th I woke up and was surprised that Makayla wasn't up yet. So I went into her room and I went to get her. My hands were about an inch from her and I could feel the heat from her body. So I picked her up and called my mom. When I checked her temperature I got more worried, it was 104. So we took her to the doctor we saw in town. By the time we got there Makayla's temperature had gone down to 101, and was drinking fluid now. So the doctor sent us home and told us to keep giving her medicine for the temperature and keep fluids in her. My mom took her home with her so I could go home and disinfect everything in the house just in case she could catch something.
Later that afternoon I called so I could go get her, mom said she was taking a nap and would bring her home as soon as she woke up. So I was surprised when my mom called me just a few minutes later and said that her and my stepdad were coming to get me that we had to get the baby to the hospital immediately. I asked why and my mom continued to tell me her temp was back up to 104 and that she had little purple dots on her face and hands. So we rushed her to Children's Mercy Hospital in Kansas.
When we got there they took one look at my girl and rushed her to the back. They immediately undressed her and the spots had spread to her whole body. They started an IV to give her fluids and sedated her so she would not feel anything else they had to do. They did a spinal tap on her and put heart monitors on her. They also told me that they had to transport her to the other Children's Mercy Hospital in Kansas City MO because they had a NICU ward there and could do more for her. So I rode with her to the hospital. When we got there they rushed her to a room and told me I had to wait while they got everything setup and situated.
About an hour later, her doctor came out and took me and my family into a room and told us that they are keeping her sedated so she doesn't feel any pain or discomfort. Then she told me that before I go into the room I need to understand that Makayla was hooked to a lot of machines and had a tube to breath. They also told me that because of all the liquid sand antibiotics they were giving her that she was more swollen and looked bigger than normal. The dots had spread into bigger patches and that she didn't know exactly what was wrong with her yet.
When I went into the room I was shocked and scared, she did look swollen and she had patches of purple on her. After about 24 hrs, they said that she had stopped breathing on her own and that oxygen was not getting to her hands and her legs from the knee down. So they had turned black. Also her eyes were starting to bleed and she had stopped urinating and having bowl movements. They told me that this meant that things in her body were shutting down. They had her on 100% oxygen and I couldn't hold her because it was too dangerous to move her. They had different doctors come in; they took blood and were still running tests. But they still didn't know what it was that she had. The last thing they could think of trying was a blood transfusion. I ok it and told them to try anything to save her.
After only 36 hours the doctor pulled me and my family into a room again and this time told me that I had to make a decision whether I wanted to keep her alive with machines or if I wanted to turn them off. I told the doctor that she had to PROVE there was no humanly possible way to save my baby before I could do that. Then she explained, her organs had all but quit. The whole time she was in the hospital they did everything they could but could not get her temperature down from 105 so most her brainwaves were gone due to the heat. So she would be brain dead, she had slight e coli in her bladder because it had stopped working and the built up urine had caused it. Her legs and her hands and one ear would have to be amputated and she would most likely be blind. Well there was my proof. My daughter would have been a vegetable, never to walk or anything.
Nothing they had done worked and there was nothing else they could do. So on January 13th my 10 month old daughter lost her life. After I went home, about two days later the doctor had called and said that all the tests came back and my little girl had died from Meningococcal Meningitis. I had no idea what that was. So I looked it up, that is why I am supporting this site. We NEED to get this out to people and make a bigger awareness about this disease. I lost my baby girl to it and I know many others have. If my story or this site can help other families who have lost a loved one to this terrible disease then I know that the people who have lost their lives to this was not in vain.
She passed in 07 and I have been trying since then to find an organization to help put Awarness out there about the horrible disease. If you have any feedback or information please contact me.
Thank you so much,