Sunday, July 1, 2007

Our Story

Our story begins about 3 months ago when me and my pregnant wife were told by Children’s Hospital of Philadelphia (CHOP) that our unborn son had a congenital birth defect Esophageal Atresia (EA) and may have Tracheoesophageal Fistula (TEF) more info below. http://en.wikipedia.org/wiki/Esophageal_atresia
http://www.eatef.org/interactive/

My wife and I and “Aidan” our son had to immediately drop everything we had planned for our family and Moved into the Ronald McDonald House in Camden, NJ to be close to CHOP. After 1 month at the Ronald McDonald House 5/16/07 my wife gave birth to Aidan Michael Kiczek. Our Surgery Team did an initial battery of tests and determined that my son had too much Esophagus Missing for them to fix him up right away. So were told to wait for Aidan to grow.
Little did I know that all the time was being wasted. One Month Later our doctor did another battery of tests to evaluate how well his esophagus had grown. He came to our hospital room to give us the bad news, Aidan had not grown and what little piece of esophagus he had connected to the bottom of his stomach was missing completely. I decided to do some research into the surgical procedures used to fix my son’s now Ultra-RARE condition. Only 30 or so babies are born every year with this “Rare form of EA”.
While searching the internet about Esophageal Artesia I stumbled upon Dr. Foker MD, PhD at the University of Minnesota Fairview Children’s Hospital. He was talked about all over the internet, on forums and press releases and his procedure sounded revolutionary. I was transfixed like a deer in headlights and I had to race off and tell my wife we had to go to Minnesota. What I didn’t expect was her reaction, she cried a lot, and told me my mind was already made up and I had made a family decision already without even talking to her or discussing it with her.
The care we received at Children’s Hospital of Philadelphia was outstanding and our extended family was able to visit us and Aidan in the hospital and we were very comfortable in Philadelphia. So instead of “making up my mind” I decided to email Dr. Foker and hear out what our Surgeon had to say. I asked his “Team” about Dr. Foker and they had said that he had mentioned it in a meeting but didn’t think it would work with my son but failed to mention it to me and said we would have surgery as soon has he could get 8 hours free to perform the gastrointestinal pull-up he recommended and said he would be doing it within the next 10 days.
I lamented but thought about having my son home with me, decided to agree with my wife and initially agreed to the surgery. 11 days later me and my wife changed our minds completely, in the middle of the night the ICU decided to move my son to a different bed within the hospital, I understand that it was necessary and that they had a “shortage” of usable beds / nurses to care for all these other sick babies, but that didn’t matter I wanted my son to get the best care and changing not only his nursing team but his whole environment was very uncomfortable the sad part is after they moved us once without notifying us they did it again the next day this time to a general floor instead of a Intensive Care Unit. Me and my wife were angry as hell and my initial resentment over her feelings about Dr. Foker came out. We were both honest with each other and she had said the gastrointestinal pull-up procedure made her uncomfortable, scared, and she would much rather Aidan’s Esophagus was fixed more naturally. I decided to reply to Dr. Foker by email and told him our decision to switch to his care on July 4th and got a response the same day! Aidan’s Godmother was with my wife when I told her and she said, “Don’t tell me he replied to your email! I don’t want to like him”. She really did support our decision she just didn’t want to stop being able to visit her godchild every week.
When I shared our views with our Surgeon he said if our insurance Aetna would cover the transfer to Minnesota he would support it 100%. They made some calls and not only did our insurance cover it but they also covered my son’s trip in an Air Ambulance! So instead of having to worry about maybe having to fly commercially Aidan and my wife would be riding in style. So far Minnesota has been nothing but a godsend for Aidan not only has he been getting outstanding care here, but Dr. Foker and his Team have been very supportive of our decision. The gastroenterologist was able to find Aidan’s Distal Esophagus and our situation wasn’t as dire as CHOP had made it seem. Dr. Foker came to speak with me about the results of the study and told me he was almost 100% certain that my son would have received a gastrointestinal pull-up if he had stayed at CHOP and would have to live with the side effects of that.
Many of the prayers so many of our friends / strangers have been saying for Aidan were starting to pay off! Dr. Foker procedure involves stretching the tiny esophagus very slowly, then when the gap is small enough, repairing the missing esophagus with actual “self” grown esophagus. He will unfortionatly be traveling first to Germany / Poland / Romania for conferences on Esophageal Artesia to share his revolutionary procedure and to help 8 babies who desperately need him, before being able to treat my son. He feels the doctors there are quite capable and willing to learn. Any surgery that is less then 20 years old is considered new and since Dr. Foker’s procedure is quite complex, takes a lot of time to perform and is very easy to make mistakes with it has not received as much enthusiasm in the US as other countries. Side-by-side comparing the results of gastrointestinal pull-up to the Dr. Foker method and there is no comparison essentially the 2 procedures have the same risks short term but after 1 year the Dr. Foker babies are essentially normal where as the pull-up or transposition babies problems are sometimes just beginning.
Being from NJ and driving in Minnesota is something you should experience at least once in your life, me and Aidan’s Grandfather “Alexander Kiczek” drove from NJ so we wouldn’t have to rent a car. While Merging onto an expressway cars STOPPED in fast moving traffic to let us in! The people here are polite to the point of dangerous.

-Michael Kiczek
kiczek@kiczek.com

1 comments:

mike (snakemeat) said...

Stay strong man, sounds like things are looking up. I'll continue to pray for Aidan and the entire Kiczek clan.