Joey's story...Our family's experience...

Joey’s story….. Our family’s experience…..I have to add, this is long and I am a terrible writer and my grammar is even worse! It has taken me 2 days to do this with my arm numb and neck and spine killing me and as I write this I’m on a few pain meds…so please forgive this long winded terrible grammar (lack there of lol) story!



Jared had completed his Masters Degree and training time of 18mos with Timken and was being transferred to the Bucyrus plant, we were just getting settled in to our house we had bought just 14mo before his transfer... Not only were we getting settled in to the new house we also loved the small community of North Canton Oh immensely. We were very sad to have to move although we knew in the beginning there would be a chance of moving we were hopeful and prayed a lot that we could stay. …The “there is a reason for everything” saying comes into play…….



With that being said our crazy journey began, Juliana was only 3 months old (a month before we had a scare with her that they could not find her soft spot on her skull...all was well thankfully) as we started our search for a new home. We looked at several areas close to Bucyrus but the only one that met our requirements for good schools, good health care and good neighborhoods and close to some family support was Delaware oh.(50 min away from Bucyrus I might add) So we started Sept. 2006 looking at house after house after house as well as having the stress of getting our house on the market! We were blessed that his company would purchase our current house from us if it did not sell with in 90days…that was a ton off our shoulders!



So the Search began, weekend after weekend, Stressful road trip after road trip, 1 contract dream house fails to meet inspection…re-open the search to find another house by this time it is 2 weeks before Christmas of 06’. At this point neither of us could agree on a house, Me I just wanted the search to be over and it literally came to an end. Christmas just 5 days away the movers come, pack us up and off to Delaware Oh. We go! The whirlwind starts 1st with me and 3 herniated disks in my neck. 2nd we are in our new home for the 1st day and I have a list of 3 pediatric doctors to research for the kids….Well Juliana (5months old) starts coughing, high fever …the works! So I literally play eni meni mini mo with the list of 3 doctors and we go for our visit where she has a terrible case of bronchitis. After the holidays, the school Joey will be attending tells me even though he just had his yearly check up that November just 2 months before, he will need a physical to start school…so I say ok and just take him to the eni meni mini mo doctor (which by the way is certainly far from how I choose doctors) we go in for his physical and the doctor starts to listen to his heartbeat making Joey stand, sit, lie down all these different ways. I’m thinking ok this is something new; maybe he does this with everyone? Boy was I wrong; he looks at me and says he has a heart murmur he will need to see a Cardiologist. Hmm, I am in disbelief or at least it feels that way. He says it seems like a simple murmur nothing to serious but we need to get it checked… so 2 weeks later we are off to Children’s for his appt. where 1st Joey has a EKG done, the cardiologist looks at us and says “I believe he has a hole in his heart, no big deal can be fixed by a simple “cath” procedure ..I would like to do an echocardiogram for the exact location; really this is a simple procedure” and walks out…. So we go to the next room where they do an echo and then back to our doctor’s room for him to open the door and say “After 30yrs of practice you would think I would know when to keep my mouth shut” at this point we are extremely overwhelmed, confused, anxious…etc…. The diagnosis is ASD (Atrial Septal Defect) he will need Open Heart Surgery”! We literally were blown away!! He had just had a physical 2 months ago, He has one every year…WTF is going on??? This among many other thoughts is going thru mine and Jared’s head at the time.

So of course he fills us in, we cry all the way home trying so very hard to not let the kids hear us or see our tears. We both call our parents and we both are unable to give full detail of what ASD is since after we heard Open Heart Surgery our minds left us both. So as soon as we get home to our house that we are still living out of boxes, things are a crazy mess still since the move I immediately jump online to research what ASD is and to fine the best surgeons in this field and make the necessary appointments…

After countless hours of research and tons of information I have printed off we go to our 1st of 3 appts, where we interview the surgeons who will operate on our little man. 1st surgeon, very young, highly recommended by the chief of surgery at Children’s. ( too young and inexperienced for my liking though) 2nd off to Akron for an interview with the chief and co-chief of surgery at Akron Children’s hospital who says they would happily do the surgery but Columbus Children’s Hospital has one of the best Pediatric Heart Surgeon in the world….(and all surgeons in Ohio were trained by him) .Really I think, I knew this 3rd doctor I wanted to meet was one of the best but unfortunately 2 receptionist at Children’s assured me that the 1st doc I met with was just fine and that this was a simple procedure and I should just keep my appt. with him( Simple procedure I think to myself its effin’ open heart surgery for Gods sake!)…I said no I want Dr. #3!! She says fine but we can’t get you in until May for the interview. I said well the doctors are saying this needs to be done with 8 months before his heart enlarges more than it already has, she reluctantly makes my appt. (in may of course)..I was not happy to say the least!! After hours of Crying and virtually having a nervous breakdown and the not so nice conversation I had just had on the phone with this lady, My Aunt calls as she is trying to console me, She has another call clicks over comes back and says wow you will never believe this. …..It just so happened at that moment her friend/colleague Pediatrician and our soon to be patient (who lives all the way in FL.) at our next surgery in Italy for Ace Vision is friends with this so called great doctor…..next thing I know I am not treated like an over re-acting mom (but really who wouldn’t have done the same) I get my appt within a month and my little man is in surgery on May 24th. The surgery, well I can not recall most of that day as to date is such a blur…I had never prayed so hard and smoked so many cigarettes in one day! (Of course I stop smoking for 7yrs until this) What I do remember however is the nurse coming out after the long 4 hours of waiting to say he is doing great, they are closing him up and I will be back when they take him off the heart and lung machine to update you, probably in about an hour or so….. Next just 20 min later the surgeon comes walking towards us. The thoughts at that moment were...Why is he walking out here to talk with us? What in the world happened?? Well, my little man came off the heart and lung machine very fast and strong...no need to worry! The next 48 hrs were spent in the ICU then in Recovery for 4 days…Then home where I couldn’t sleep so I slept next to him every night checking is heartbeat, his pulse, his breathing…you name it!

Joey is now 8, a year and 5 months later doing fantastic. Of course he has small issues at times, this summer was hard for swimming as his circulation is still a little messed up and he gets cold easily and he needs to maintain a good heart healthy environment from here on out…Overall we couldn’t ask for him to be doing any better!The purpose of writing all of this: To tell Joey’s story has always been very hard for me, I could never talk about this with out crying even till this day. Of course as a mother I have a lot of guilt although I did all the necessary precautions during pregnancy, I still have guilt that it is my fault even though I know its not…. I guess this is my therapy to write it out! Another purpose is to be an advocate for Joey and Congenital Heart Disease and awareness as well as the families involved. Unfortunately there were no support groups in the Central Ohio area to attend and my goal is to help with this as well as the awareness. In addition I do not want anyone parent or family member to ever feel that their situation is minimal to others..Yes there are worse Congenital Heart Defects out there then Joey’s ASD…much worse. My point Joey is my child and I am his mother and he should have the care plan that I the parent felt was best, so I know I did everything I could do what was right by him in his life. Last, awareness and symptoms: Joey complained for 2 months about his heart pounding like it was going to jump out of his chest so at his yearly physical I mentioned this and it was put on the list as “growing pains” He was/is a skinny child and it was pains of growing and development….Obviously this was not the case for Joey….So my journey begins as an advocate and to get the word out there about the signs and symptoms and support for those in need…… Situations that pop up into our life seem to make us unhappy, but God truly has his own plan for us even if it seems to make us unhappy at 1st~ Jared and I did not want to move from North Canton but had we not we may have not found Joey’s ASD (as it usually goes to adulthood with out notice and is life threatening) Or the great friends we have met here that helped us thru it all from our neighbors to our church! Thank You!Thank you for reading this long winded Journey………….Now you are apart of the awareness project!


Joey was born on Nov.3, 2000. He was born a healthy 8lbs 20in! He was growing in the 95th percentile always! It wasn’t till Jan.07 at the age of 6 he was diagnosed with the birth defect Atrial Septal Defect (ASD) a Congenital Heart Defect that he was born with and was never found until a psychical for a new school when we moved. Joey had routine annual psychical and was healthy so we thought. It started in Nov.06 at his annual appt after he would come home from school gym class saying his heart felt like it was going to pop out of his chest. At his appt. we talked with the doctor who said it was just growing pains only to find out a few months later (Jan 07) his true problem was a hole in his heart. May of 07 Joey had open heart surgery to repair the hole and to date is doing well other than the occasional body temp issues that should hopefully soon go away! We are so blessed this was found and our little man is ok and here with us, we pray that no other surgery's in the future will be necessary and try to teach him how to live a heart healthy life.


Its has become My Heart’s mission is to provide support, spread awareness, educate and advocate for those affected by Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups, and the community