In honor of my son Charlie and our Buddy Walk team, I'm going to post a FACTOID about Down's Syndrome every day starting October 1st (tomorrow) until we walk on the 19th!
I hope you will read them all and remember the amazing things that folks with Down's syndrome bring to our world.
But, today I'd like to share some interesting facts about my
angel, the captain of our Buddy Walk team, Charlie's Angels: Charlie
Harrison Charles Brandenberg "Charlie" was born on July 28, 2010 early in the morning. We did not know our sweet baby had Down's syndrome in the first moments we knew him. He looked perfectly healthy and appeared very alert. It wasn't until I was given my wrapped up bundle of joy that I noticed he might have DS. In fact, I was the only one who saw it at first. I think it was mother's intuition and because some of the doctor's thought that it was a possibility since I was an "older" mom-- 38 years old.
I couldn't take my eyes off him. I was already very protective and in love with my little guy. I was worried in my heart of all the possible problems that he/we might encounter. As it turned out, he did have a heart defect discovered 2 days after his birth. This heart defect (known as ASD and aVSD -- basically translate to holes in the heart(atrial and ventricle) caused some issues with feeding and breathing. He wasn't able to keep up with the demands of feeding -- it would literally wear him out.
The heart defects are pretty typical of people or babies with Down's syndrome. In some people, the holes simply close up and cause no further problems with their development. However, some babies' holes in their hearts are too big to close and cause problems --mainly with breathing, fatigue and generally slow development. Charlie needed to have surgery to repair his holes. At the time the doctors told me about his heart condition, I was in complete shock and deeply saddened. I thought "holes? in his heart??" I thought it was a fatal problem. But the doctors assured me that he would get through this just fine. It was a truly difficult time for us. I was scared of his surgery and the outcome.
We were very lucky to have a "rockstar" of a surgeon at Cook's Children's hospital in Fort Worth, TX --as Charlie's doctor. His abilities as a Pediatric heart surgeon were sought after all over the country. So, in the realm of heart surgeries, they told us that his was "routine." That was incredible to hear. It was such a relief to know that it his problem would be "fixed!" It was still extremely difficult to go through the surgery however. No one fathoms seeing their 4 month old wheeled away in a red wagon to be operated on -- much less have an open-heart surgery. It was actually terrifying. I liken it to getting an arm amputated... it felt like a piece of me was being taken away. But the story gets better.
Charlie healed -- and he did fast and well! I couldn't believe how quickly a child could rebound from open heart surgery. Children are amazing. Charlie is amazing. I am so proud of him still. The line of his chest is a faint reminder of what he went through. But that is the only reminder of what he went through. He has a healthy heart today and can do anything he wants! We are infinitely grateful to the incredible skills of the surgeon and Charlie's amazing healing strength.
I'd like to say that Charlie's life from that point on was flawless and we just coasted along without any visits to the hospital. But not so, when one has Down's syndrome. He is being regularly seen by a variety of doctors to maintain a healthy life. We must make sure his hearing and sight are where they need to be -- so we have regular check ups in that area. Thyroid issues can creep up in folks with Down's syndrome, so we watch his levels. All is good there.
He also had something called hypotonia or low muscle tone. That can cause swallowing problems as well. Charlie had some swallowing issues for the first couple of years but currently does not! So we're happy about that. We used to have to add thickener to the liquids he drank --to help him swallow them better. We constantly have to check his swallowing with "swallow studies" at the hospital.
In past posts I had written about another major challenge Charlie had to endure -- Charlie's bout with Guillain Barre -- I'll repost it here:
In January of this year -(2012)-right after a beautiful Christmas and New Year-- Charlie got a stomach bug. This stomach bug lasted 4 days roughly. I noticed something strange though around day 4 -- he was acting weaker instead of stronger. Although the diarrhea had subsided, he was showing no improvement in his muscle strength. I took him to his pediatrician and he gave me antibiotic and sent me home. It was the "he's just weak after a bad stomach bug" diagnosis. So, I brought him home, worried yet hopeful he'd heal and this would be behind us. I really expected him to show improvement and not decline. I even posted on Facebook at the time that I thought my son Charlie was "regressing" and whether anyone had any advice.
Charlie's arms and legs kept getting worse--he refused to do things he used to do. He didn't pull up in the crib anymore; he sat a lot and played on the floor. Previously, he was cruising around the furniture and that stopped altogether. He also had trouble picking up his sippy cup, and he had to move his mouth to his hand to feed himself--instead of moving his hand to his mouth. Poor Charlie was crankier than usual too(he was normally happy and playful), he stopped scooting around on his bottom and even avoided scooting over to me--which was really odd to me. Still our sweet, sweet Charlie, he continued to show love and was fun, cute, and talkative.
Around day 8, I was up at 3 am and then again 5 am that morning worrying about Charlie; researching his ailment online. I kept getting up thinking about him and his situation. Beside myself, knowing that he's getting worse, not better. I knew something had to be done soon. It was the final straw the next morning when I went into his room and peaked inside his crib and noticed he had slept through the night and didn't move an inch. The night before, I had covered him with a blanket and fully expected him to kick it off at some point, but he didn't. I picked him up in tears and realized my poor little baby was drenched in sweat. I was shaking as my "mommy-radar" went off like a siren in my head and we kicked it into high gear. I said "We're going to Cook's!!".
At Cook's we got the red carpet treatment. Charlie had an open heart surgery at 4 months old and they took care of him then. (Very well I might add -- and I was grateful for that). I remember getting Charlie in the car to go to Cook's and I was so confident in the decision and even excited because I knew we were on our way to "get help." It was like going to the Wizard of Oz. I knew when we walked through the doors, they would step in and rescue him. They are very aware of the many issues kiddoes with Down's syndrome can have. Strangely, this disorder that Charlie had was not one of them.
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| Charlie LOVES to read.. passing time in his hospital bed |
After a battery of tests -- blood drawn, x-ray, MRI, and even a spinal tap -- they found what the problem was. The young ER doctor who was in charge of our case was the answer to my prayers. He did all the tests that I previously researched and knew could help us determine what was wrong. The night before, Brock and I researched what caused paralysis in limbs and one of the problems came from something called Guillain-barre syndrome, which can be determined by spinal tap only--testing the protein levels. Basically, this syndrome is a very rare reaction to his stomach bug. Something that afflicts 1 in 100,000 a year; mostly men in the 30-50 age range. This reaction was actually Charlie's own body attacking itself. The antibodies from the virus were going crazy and destroying the nerve endings in Charlie's body, starting with his legs, moving to his arms and would gradually cause devastating debilitation of the rest of his body if not treated quickly. This disorder typically has a recovery time of 4 months to many years.
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| Charlie meeting a nice stranger while on a walk in the red wagon |
I was relieved that it was something he'd recover at all from but the whole thing was just mind-boggling as to why he was in this position at all. It was imperative that we get him on the proper medication to turn this thing around. I was in constant tears as you can imagine. First, I was relieved to "know" what was causing his rapid decline and second, that it was recoverable and lastly, extremely frightened to imagine what could happen if the drugs didn't properly help him.
I met his neurologist soon after and discovered we were in for a long haul -- at the hospital for at least 4 months he said. He warned us that it would get much worse before it got better. Which means he would become more paralyzed and even lose his ability to breathe. He would have to be on a breathing machine. The medication -- intravenous immunoglobulins (IVIg) -- was our miracle drug. He was hooked up to a drip for 4 hours each night for 5 nights. He showed improvement almost immediately. The drug was actually a blood product that overwhelmed the body with antibodies and "convinced" the body not to produce anymore--so hence, the destruction of the nerve endings ceased. We did however learn of another issue sweet Charlie would have to face when they did the MRI.
Fortunately, the issue was less serious in comparison to the Guillain-barre. He would have to have surgery at Cook's for a spinal defect called a tethered cord.
We have since had that surgery as well -- on June 28th, a month before his 2nd birthday -- to the day. He handled that surgery with spunk and humility. He was our hero again.
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Charlie blows me away with his strength, confidence, abilities, perseverance and most of all his bright smile and happy personality. I'm still amazed at him when I look at him. I remind myself every single day when I see him run around the house, climb up stairs, feed himself, sign like a champ, read his books, laugh and smile, play with his toys and his brother Max and school friends... etc etc, I remind myself of how LUCKY and BLESSED we are.
He's back and stronger than ever!
So, now Charlie is three and ready to WALK in his FOURTH Buddy Walk!
Please join us! Come over and give him a fist bump or a high five! He will give you joy and leave you with an unforgettable sense of joy.
~ Diana
