Today is World Meningitis Day. A day to help spread awareness about a disease that has stolen so much from our family, so much from my little girl.
Madison was born perfectly healthy, but everything changed just 11 days later. She didn’t wake to eat, her skin looked grey, her eyes became empty-as if her soul was sucked right out of her, she spit up her last meal, and began grunting when she breathed. Within moments we knew something was terribly wrong. We had no idea just how wrong. We had no idea our entire lives and every dream we had for our family would be crushed in an instant. She was positive for GBS Bacterial Meningitis. An infection of the membranes surrounding the brain and spinal cord.
Even when diagnosed early, and adequate treatment has been started, up to 20% of bacterial meningitis patients will die. It can kill within 24 hours if not treated and can affect anyone of any age. We watched Madison, at the time a 6 pound infant, fight for her life, hooked up to multiple IVs, breathing and feeding tubes, having seizures, unable to even open her eyes for 2 weeks. We lived in a hospital room for a month, and then a rehab hospital for another month. Even though Madison was diagnosed and treated extremely quickly, she was left with a severe brain injury and now has to work incredibly hard everyday to do even simple things, like sitting up on her own, or holding something in her hand.
Trust your instincts and please seek urgent medical help if you think even for a second that you or someone you love might be affected. I cannot stress this enough. Meningitis is rare, but serious and deadly. To this day we don’t know how Madison contracted the disease. I will never understand why this happened to her. But I also know how lucky we are that she survived, as through this journey I have personally seen this disease take the life of beautiful children far too soon. Any child under the age of 1 month with a fever should immediately be taken to the ER for meningitis testing.
Watching someone fight this disease is extremely difficult, and unfortunately the afterlife of meningitis for survivors and their families can be just as hard. Our days are now filled with multiple medications, (medications with serious and strong side effects), lots of specialist follow ups, EEGs, hospital stays, insurance phone calls, speech, physical, occupational, and vision therapy, and lots of hard work. Please take the time today to learn the symptoms, help us spread awareness, and say a prayer for the many families that have been affected. And to my baby girl, please never give up! You are our miracle.
Symptoms & signs of meningitis in all ages include:
- Fever, cold hands and feet
- Drowsy and difficult to wake
- Severe muscle pain
- Severe headaches
- Dislike bright lights
- Confusion and irritability
- Blotchy skin/spots, rash
- Stiff neck
Symptoms in babies & toddlers include all of the above as well as:
- Rapid breathing or grunting
- Unusual cry or meaning
- Refusal to eat
- Hunting fontanelle (soft spot)
Lifelong effects post meningitis can include:
- Sever brain injury
- Hearing loss
- Vision impairment
- Learning difficulties
- Developmental delays
- Behavioral changes
- Memory problems