Tuesday, August 7, 2018

An Angel for Our Angels, Volume 7

“To say Dr. Campbell was a hero is an understatement. We should all be as lucky to leave behind a legacy such as his. The number of lives he saved as both a surgeon and an inventor (with Dr. Smith) of the VEPTR device truly made him an angel among us. Even though he was world renowned, he was the most humble man who just wanted to help kids. 

I will forever be grateful for him. I’ve told him so many times that saying thank you will never ever be enough. He gave me the most amazing gift ever:  he gave hope for Madden when other doctors had given up. He saved Madden’s life. He always managed to see the potential in all of his veptr kids, never focusing on the struggles or medical equipment they may have. He continued to remind me that Madden’s trach/vent are just a bridge to a long healthy life. He always managed to relate to these kids, like somehow he knew deep inside what they were feeling. 

One of his best sayings was always, “I can fix a broken rod, I can’t fix a broken spirit”. With that motto that is how we figured out our life with all of Madden’s “accessories” and if something breaks, falls out or someone trips over his stuff, as long as he’s playing and living life we will fix it. 

We will forever miss this amazing man. I can’t even begin to describe the heartache in losing him. I just hope he knew how loved he was and how thankful I am for him saving Madden. 
-Mandy Sheridan

"We had found out about Maciah in utero. So now what?

Fast forward a few months when the Radiologist couldn't read the ultrasound. Time to find a new Dr. And so began our search because at 5 months we still didn't know what "it" was. So we got connected with the CS Facebook page then onto the VEPTR page. And as a newbie we soon realized that CHOP & Dr. Campbell kept being talked about. And it was said he had at least a 6 month waiting list. So that afternoon I got on the CHOP website & filled out our info not expecting a quick response. Well we heard the very next day!

Within the week, we met Dr. Campbell. Her anomalies are T2-L2. When we met him, she was in the 40's.  When she finally got her VEPTR at 13 months, she was pushing 90 degrees (in 3 short months she had a 50 degree increase).  With a chest wall half the size as it should be (hers was a 7 and it should be a 14) so all the room counts. For the 1st time she could sit up on her own!

We didn't get many pre-op pics with Dr Campbell because the giggle juice was usually already working. His quiet authority gave us peace that she would be fine. Again we fast forward to expansion #13, when we were reminded of how great this device truely works. He came into the  surgical waiting room in quiet authority and told us that her CS had progressed significantly again.  She has also outgrown her hooks & screws, so this one will be "a big one" for the "little peanut."

When we heard of his passing, we were heartbroken & shocked  just as everyone else is. Maciah fell in love with Mrs Campbell & Abby @ the reunions when they took time to talk to us all. We are forever thankful that Dr. Campbell gave us many firsts with Maciah that without him would never have happened! And so we ask, "So Now What"?
-Laura Moore

"When Fionah was a little over 2, we were referred to a Scoliosis specialist who didn’t even give us the time of day. Fionah was having pain, low endurance, and decreased appetite.  The doctor didn’t even view her medical records before we came. He told us he wouldn’t operate on a child her age, and we were to get a CT scan and come back in 6 months. I called the hospital and requested another surgeon see her. He immediately said Fionah needs to see Bob Campbell because she was a VEPTR candidate.

We met with Dr. Campbell and he told us she absolutely needed VEPTR rods and within two months she was in surgery. I was a little nervous about the day he had given us: 9/11/2012. I asked him if it was a good day for surgery. He completely changed my perspective and told me “Something good needs to happen on that day.” I hadn’t thought of a major surgery as being something good because at that moment I was completely overwhelmed but he changed that. He reminded me that it was a start to a long life. He always told me that this journey “Is a marathon and not a race.”

Dr. C. encouraged me to allow Fionah to be a typical kid because we were doing this to give her a childhood. Dr.Campbell paved the way for how we walked this journey with courage and a positive outlook. He gave us hope for Fionah’s future and for that I am eternally grateful. Fionah was his Wonder Woman. Even though we eventually transferred care, Dr. Campbell was always and will always be our hero.
-Shawna Ogle

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