Children’s Miracle Network Hospitals change lives! #HelpKidsLiveBetter
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Children’s Miracle Network Hospitals save and change lives every day. I know this because my life (and my daughter’s) has been changed for the better thanks to the support and care we have received several times at our local hospital, The Barbara Bush Children’s Hospital in Portland, Maine.
Every minute 62 children enter a Children’s Miracle Network Hospital for treatment. Let that number sink in. There is nothing more important than giving our children the best. As parents, we all hope and pray that our children live long, happy, healthy lives. We all worry about them being sick. Really sick. Most kids battle the odd virus or stomach bug, suffer a broken bone or ear infection. Those temporary ills go with childhood. But, there are so many kids that go through so much more before they are even old enough to tie their shoes or know their multiplication facts. These kids (and their parents) desperately need Children’s Miracle Network Hospitals.
Nothing prepares you for the moment your pediatrician tells you something is wrong.
Our regular doctor was on vacation that day so we saw someone new. Our 6 month wellness check-up should have been routine, but it wasn’t. It left us feeling hopeless, desperate, scared and overwhelmed.
I was very focused on the doctor’s body language and tone as he delivered the news that something was wrong. My daughter’s head circumference was significantly above the “normal” parameters.
I heard the worst: all the frightening possibilities.
Tumor, pressure on her brain, developmental delays, MRI, “water on the brain”, Hydrocephalus, “do not get online to research this until we know more”.
What was happening? I can say I didn’t cry right then. My eyes watered and I was in shock that this was happening to my happy, seemingly healthy baby. My world had just turned upside down. How were we going to handle this?
The wait for those answers was short. After a week (a lot of it spent crying and worrying), we knew what we were dealing with. Hydrocephalus: extra fluid puts pressure on the brain and can cause brain damage. It’s often
characterized by head enlargement in infants and can cause headaches, nausea, impaired vision, cognitive difficulties, loss of coordination, and incontinence.
Treatment is often a tube (shunt) inserted surgically into a ventricle to drain the excess fluid.
This was the plan: My 6 month old baby would undergo brain surgery and have a shunt inserted in her head and tubing would be placed down her neck and into her stomach to allow the fluid to drain. Although a shunt generally works well, it may stop working if it disconnects, becomes blocked, infected, or is outgrown. All possibilities that would require several more surgeries.
What I learned was that I had to be my baby’s best advocate in so many ways.
I had to ask the hard questions and really listen to the answers. I had to be with her when they put her under for each surgery, watching them cover her face with a tiny little mask until she was unconscious. I had to sit in the waiting room those long hours, eager to see her neurologist and find out how things went. I had to be in recovery when she woke up, scared and hurting, I had to be the best Mom I could and make it okay for her.
My baby girl is going to be 13 next month. She has endured almost 10 separate surgeries now between the initial placement of the shunt, multiple revisions, replacing the medical grade tubing, and various other surgeries for issues related to the Hydrocephalus. Through all of it, she has stayed happy and smiling, growing and learning. She is my world.
I’m indebted to Children’s Miracle Network Hospitals.
If we did not have the support, professional services, patient and considerate bedside manners at The Barbara Bush Children’s Hospital, I don’t know what we would have done. My daughter needs the best treatments available. I need the support, encouragement, and overall belief that we aren’t dealing with this alone.
There are so many families out there getting the news that something is wrong with their child. Donating to Children’s Miracle Network Hospitals is one way to ensure these hospitals can provide the best care for these children. Every dollar raised at your local Wal-Mart or Sam’s Club (now through October 9th, 2016) goes directly to your local Children’s Miracle Network Hospital so they can provide more than $3.5 billion in charitable care every year.
Will you#HelpKidsLiveBetter and donate to the 2016 Children’s Miracle Network fundraising campaign?