All Communities > Moms of Bacterial Meningitis Survivors > Hi there!

Hi there!

Jennifer - posted on 04/15/2010 ( 6 moms have responded )

I created this group because there doesn't seem to be many places online for mothers whose children have survived bacterial meningitis.

Our daughter fought for her life in the ICU and then neurology main floor at Children's Hospital in DC due to group b strep bacterial meningitis. We lived with her in the hospital for a month and were so blessed to be able to bring her home. She has since been able to begin bottle feeding and no longer needs a feeding tube and we've been working with PT, OT, and vision therapists to work on building back her strength after all that she's gone through. Her hearing is intact, but we know that she definitely has vision issues. We've been working on tummytime, teaching her how to roll over and play with her toys. As a result of the meningitis, she has a handful of health issues including diabetes insipidus (which is an inability to produce ADH which tells your body to hold onto its fluids). She also takes anti-seizure medications and we've been weaning her from her hydrocortisone to see if she can produce cortisol.

If you're a Mom who had to go through bacterial meningitis with your child, it'd be great to hear your story, where you're from, and the challenges and health issues you're child is facing.

Join Circle of Moms

6 Comments

View replies by

Kristy - posted on 07/30/2012

I had twins In June of 2010 they were born three months early, and had to be Place in nicu for three months till they were full term pretty much. Two weeks after they were born the doctors were worried a out them because they weren't getting better, but worse. They tested my kids and found bacterial meningitis is one of them, they treated both for the same thing even though they didn't find it in the second one (brendon) they went through hell the next three months. I was told over and over that they weren't going to make it. My instincts told me the doctors were messing up, and I did my research and caught them doing just that. I had to force them to retest brendon cuz no matter what they did. Otho g was helping even though my other son (mathew) was slowly getting better. I literally had to force the doctors to retest. They didn't want to. My sons ended up on jet ventilators it got so horrible. Finally after months it looked to be getting better. My son mathew was ready to go home and brendon, although he was struggling was slowly getting better. And then it all turned south again. When they were finally ready to go home they were put on hospice. The had p.t, o.t, speach therapists( to help with there eating) the had a plethora of medicine from ceasure to pain including morphine even stool softener. Brendon had to go through two surgeries. One for hernias both in the belly button and both testicles and a shunt. The "Meningitis" had Litterally eaten his brain. A weeks or so after he got the shiny we went in for a check up to make sure it was working right and to adjust it. I had complained about his breathing and they said it was nothing to worry about. They wouldn't even do an X-ray to make sure. A day later after all he went through. My son passed away. I hurried him the day before he turned 7 months old. Mathew just turned two. He is the happiest kid I have ever known. He is finally starting to walk and is learning to talk. He has a p.t, o.t, speach therapist, eyes specialists, and hearing specialists and he has to wear a leg brace. His right side doesn't work right because of the abscess in the left side of his brain. I thank god every day for him.

For all the moms out there whos kids survived I am sooo happy for you. It is the worst feeling to lose your child I still live with it everyday of my life. You r truly blessed
I wish all the families all the happiness in the world

Thank you for this chance to speak

Ashley - posted on 07/28/2010

855

It's pretty amazing to see others who went through this as well

My son was 2 weeks old when we started noticing that he was very warm, very irritable, wouldnt sleep and would scrunch his face in pain. I took him to the ER where they took his temp. It was 39.9 which was super high and he was very close to seizing. They had him hooked up to IV's right away and had a spinal tap ordered. Once the spinal tap was done we received the terrible news...he had bacterial meningitis. They didnt know how bad it was, wasnt sure if he was going to make the next 24 hours. They did an x-ray on him and couldnt find the infection anywhere in his body. A couple days later they did an ultrasound on his head where they found the infection as well as brain damage. Our 2 months in the hospital was devestating. He hd 4 spinal taps, 3 MRI's, 11 IV's which they eventually put in a PICC line. Everytime they'd think he was ready to go home..he'd take a few steps back. His blood pressure was starting to rise from the 3 different antibiotics he was on. They told us we were very lucky that he survived and if we would have waited a day longer we would have lost him. He is 2 now. We arent sure how the brain damage will affect him but he's doing amazing!. He just started daycare and a happy healthy 2 year old. Everyday i think of what would have happened if i didnt listen to my mommy instincts when they were tellin me something was wrong. Everyone kept tellin me he was just Colicy and he'd be fine, meanwhile my baby was dying right in my arms. It's great to see everyone else's success stories!!!...

Jennifer - posted on 05/19/2010

Evie, I had sent you a message through Facebook after your posting - hopefully it went through okay? Sometimes I have to step away from the computer in the middle of typing or emailing because my daughter is crying for me and so I can't remember whether I sent the message or not. I'm hoping you and your son are doing okay. Just wanted you to know that I've been thinking of and praying for you and your son.

To answer your questions, our daughter came down with the bacterial meningitis at one month. I started noticing her vision issues when I saw that her pupils weren't responding to light the way that they should. I also noticed that if I snuck up on her crib and waved my hand in front of her, she wouldn't notice. This has improved though and her vision seems to be getting a little better with time. The best way it was explained to me was that by the time her brain processes whatever is in front of her (a camera flash, a quick moving hand, or something else that's there and then gone in an instant), it's gone by the time her brain may have processed it. We know she can see some things though by her response to them, like her toys when they're hanging above her. Things that are more stationary and stay there in front of her, she has an easier time seeing.

Vanessa, I'm so sorry that I'm just now responding to your post! We've had a crazy few weeks with our daughter with labs, tests, appointments, and what not. I know exactly how you feel when you talk about the flashbacks to when it all first happened and feeling so angry and sad. I feel so angry that this happened to our daughter and so sad by how much harder it is for her because of it. We had friends of a friend who just last week lost their 18 month old daughter to meningitis and when I heard of their loss, it reminded me of how lucky we are that our daughter is alive. I just wish she didn't have to go through all this - the constant labs, tests, etc. I'll keep you both in my prayers. Sending a big hug your way!

Vanessa - posted on 05/03/2010

.My son was diagnosed at one week old. He wasn't eating and was crying all the time. Couldn't comfort him or get him to go to sleep. The last test they did was the spinal tap...it was bacterial menengitis. My son was in the hospital for three months. On a respirator for the first month. It seemed that everytime he took one step forward he also took two steps back. My son has partial brain damage from the infected fluid sitting on his brain. He has hydrocephalus which required a VP Shunt to be placed at about two months old. That one collapsed and he needed it to be revised at about three months of age. My son developed two different types of seizures, the infantile muscle spasms were the worst. We tried every typr of medicine and dosage. For his first year of life he had a seizure every hour on the hour. The only time he was at peace was when he was sleeping. Every day I took him to the pediatrician to get a shot to try and stop the seizures, on the weekends I gave the shots. The ER docs refused to do it for me because the dosage was for adults. It didnt help. The neurologist said she would give it another week and after that she was going to refer him for trial meds. A few days later he woke up at 6:50am and had his first seizure of the day..it was his also his last. My son's seizures went away and he was off meds until the end of kindergarten. Since then it has been an ongoing battle. My son had seizures every couple of months. He has also had to have his shunt replaced 5 times in the last two years. My son is now on a combination of meds and he has been seizure free since June 25, 2009. This is the longest he has gone since they began again. My son is going to be 13 in a couple of months. He is mentally delayed, at the age of about a 6 or 7 year old. He has always been slower at reaching his milestones as a baby and toddler but it is more obvious now at school age what this ugly disease has done to my son. I worry about his future, who will take care of him when I am gone? Will he ever be independent? It is heart breaking. I have flashbacks of those days when he was sick, I am haunted by menengitis...I am trying hard to accept that this is the hand god has dealt us. I am angry and I am sad for my child. I pray that medicine advances quickly so that other kids will not have to suffer.

Evie - posted on 04/21/2010

Hi Jennifer

Our son contracted bacterial meningitis (Pseudomonas Aeruginosa) a few days after he was born whilst still in hospital. He spent a week in ICU where he was fed by a gastric tube and after having sleep apnea he was also ventilated. After his week in ICU he was then moved to the Special Care Baby Unit where he was giving antibiotics for 3 weeks through a central line. We were able to bing him home for a week but then had to readmit him as he developed Hydrocephalus as the infection in his brain left behind some debris which got blocked in one of his ventricles so he had to have surgery to put a shunt in to drain away the excess fluid.

We're not sure if our boy will have any challenges as the Doctors say it is too early to tell as he is only 7 weeks old, so far he doesnt seem to have any hearing issues as loud noises always startle him.

The Doctors at the hospital can't shed much light on what challenges may lie ahead for our boy as the 'bug' he contracted is quite rare and the Doctors haven't seen it in a baby before.

How old was your daughter when she got meningitis? What was the tell tale sign that she has vision problems? I worry our boy may also have vision problems but I guess it will be sometime before we will know as his eyes aren't fully developed yet.

Thanks for starting this group!