Alexis

Our beautiful daughter Alexis was born in November 2010 and she was a healthy 7 lbs 7 oz and 20 inches. Alexis is the first child for us and will be our only child too. Brian and I were so excited the day she was born. Everything went pretty smoothly and there was no issues whatsoever. I had been told by my obstetrician at 34 weeks that I was positive for Group B Strep so when I was in labour they started me on antibiotics right away so there wouldn’t be any risk to our baby. I never thought anything about it and just assumed that everything was taken care of.

Another couple of days passed and we noticed that the fever didn’t seem to be breaking at all so we took her back to the hospital. They then did a blood test and a chest x ray to rule out any lung infections and when everything came back fine they again sent us home. This was on Mother’s Day Sunday 2010 and we took our girl home thinking again it was just viral and we needed to wait it out. This whole time Alexis was eating fine and sleeping okay she was just cranky and fevered, but now when I look back I remember that when we would pick her up she would be upset.

It was almost like she was in pain if we moved her.

We put Alexis to bed that night and we all turned in early as we had had a few rough days and we were exhausted. Alexis was a little restless that night I could hear her over her monitor moving around in her crib and around 5:30 in the morning I heard her moaning so I figured she was waking up and I went to start a bottle for her. When I went in to her room to get her I noticed that she was shaking all over and her lips were a purplish colour and she was making these awful grunting noises. I picked her up right away and held her and she half opened her eyes and looked at me but her one arm was stiff and she wasn’t moving much. Not sure what this all meant I phoned Telehealth and spoke to a Registered Nurse.

Luckily the ambulance arrived within 5 mins and when they did one of the paramedics rushed Alexis out to the ambulance right away to start to give her oxygen. They said that she was having a seizure maybe due to the fever (febrile seizure) and we were going to go to the hospital again to have her checked out.

I went in the Ambulance with her and my husband followed behind in the car. I was beside myself with worry not understanding what was happening to our baby girl. Once at the hospital things happened very quickly. They got Alexis out of her sleeper and down to just a diaper to examine her. At this time they noticed a red “lace like” rash all over her body …. The Pediatrician on call said that he thought she may have “fifth disease” which is relatively harmless but they were going to further examine her to see what else they could find. It was then that one of the nurses mentioned that they thought her fontanelle was a little swollen. The pediatrician then went and examined her head to see what he thought. They then told us that they were going to do a spinal tap to rule out meningitis. He still felt like it was probably “fifth disease” because of the rash but he wanted to make sure. We noticed then that all the staff had left the room and started coming back in wearing bio hazard gowns and masks. They had Brian and I leave the room so that they could do the spinal tap which was terrible for us because I didn’t want her to be alone for this procedure but they said it would be awful for us to witness it and therefore possibly make it harder for her if we were upset. When they finished the spinal tap they admitted Alexis to the peds floor to monitor her. All the staff coming in and out of her room were all gowned and masked and when I asked why they told us that if there was a possible risk of viral meningitis they had to protect themselves….they didn’t gown us as we had already been exposed so there was no need.

Another pediatrician came in to see us and he said that we were still waiting to hear back about the spinal tap. He explained to us the difference between viral and bacterial meningitis explaining that bacterial meningitis was definitely the more dangerous of the two and he was going to start her on antibiotics right away to start combating the meningitis even though it hadn’t been confirmed yet. The medication they put her on made our poor girl so sick. The antibiotics were so strong her bowel movements would literally almost burn her immediately so we had to change her right away when she had one….she had an awful diaper rash for a lot of her stay.

We found out within 48 hrs that Alexis had Bacterial Meningitis and Group B was the strain.

I told the pediatrician that I had tested positive when pregnant but he stated that he didn’t think that could be the cause as Baby’s who contract it from birth are usually showing symptoms within the first week or late onset would be considered up to 3 months. To this day they still tell us this isn’t how she got it but I still can’t help but feel somewhat responsible, it’s been an inner struggle for me to this day. Alexis stayed in the hospital on antibiotics for 21 days as recommended by our Pediatrician.

Within those 21 days Alexis had to have several IV re-starts and because she was so young and chubby/healthy they had an awful time re-starting her IV’s. I remember some of the procedures taking sometimes 12 different nurses and a couple of hours in which we would all be a complete wreck. Having your child go through that is heart wrenching and it tested us like nothing else probably ever will. Alexis had IV’s in both feet, both arms and a couple in her head. By the time they thought about doing a pic line she was nearing the end and Toronto Sick Kids and McMaster Sick Kids both had no beds available so we stuck it through with the IV’s. I remember a couple of times when they couldn’t get the IV’s in in time for her next dose they would give her IM’s or Intra Muscular shots in the legs which would be awful for her because the medication would feel like it was burning to her. She would just scream and break my heart as well as the nurse’s. I saw more than one Nurse with tears in their eyes when they would have to do the IV re-starts or IM’s….I’m amazed by the job that they do and their strength, God Bless each and every one of them!!

She’s full of energy and lives every minute of everyday to its fullest. As for lasting effects from the meningitis we have seen very little. Alexis has had her hearing tested and so far everything is fine and as for her speech she may have been a little behind in the beginning but now through the help of a Speech Pathologist she is chattering away like anyone else her age. We still have a few more tests to do but so far so good and we couldn’t feel more blessed.

At 2 yrs old we decided to get Alexis the Menactra Vaccination even though it isn’t routinely given to toddlers. The cost is a little high but luckily I have an excellent benefits package at work and they covered it. It may not cover the Group B strain but it’s still more protection than just having the Menjugate and we will do anything in our power to protect Alexis from going through this again. I hear that there is soon going to be a Group B strain vaccination and you can bet when there is she will be getting it. I hope someday our government sees the value in having the Menactra shot so that it is funded for everyone.

Thank you for giving me a forum to talk about this and also for letting me read other’s stories so that I know that there are other families who understand and have gone through this nightmare as well.

Jen, Brian and Alexis Sharpe