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Wednesday, March 10, 2010
Wednesday, February 10, 2010
Help Make CHD week official!!
Over a month ago I sent a letter to our Governor and State Representatives ( one who supports the Congenital Heart Futures Act ) requesting a proclamation for making Congenital Heart Defect Week Official in our state of Ohio.
Although I am still waiting to hear from them I am encouraging everyone to do the same.
The more people the better! You do not have to be personally affected by CHD’s to understand the importance of spreading awareness.
Please help us educate people everywhere.
To see a letter sample and proclamation sample see my post with those titles on blog post!
Just a few minutes to send this letter request can save a Childs life and save a parent from losing a child!!
It is a proven fact that the earlier CHD is detected and treated; it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes.
• Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
• Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
• Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
• The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
• This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
Although I am still waiting to hear from them I am encouraging everyone to do the same.
The more people the better! You do not have to be personally affected by CHD’s to understand the importance of spreading awareness.
Please help us educate people everywhere.
To see a letter sample and proclamation sample see my post with those titles on blog post!
Just a few minutes to send this letter request can save a Childs life and save a parent from losing a child!!
It is a proven fact that the earlier CHD is detected and treated; it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes.
• Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
• Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
• Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
• The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
• This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
Proclomation Sample for CHD week
Proclamation Wording Suggestion:
Whereas, congenital heart defects are those existing at birth; and
Whereas, with familiarity of the disorder, more diagnoses are being made of what was not long ago
thought to be an extremely rare disorder and not repairable;
Whereas, CHD is among the most common birth defects and is the leading cause of defect-related deaths.
Too many babies and children born with CHDs continue to die due to the severity of the defect, the heart
defect not being detected in time, a lack of donor hearts, or failure of the medical
intervention used;
Whereas, more than 40,000 infants (1 of every 100) are born each year with heart defects in the United
States;
Whereas, CHD is being researched by numerous professionals (at least 35 defects are now recognized) in
order to more accurately describe its origin, physical signs and symptoms and surgical options;
Whereas, it is important to raise awareness of this disorder, so that the likelihood of early diagnosis and
intervention will increase;
Therefore, I, _________________ Governor of the State of _________________, do hereby officially
proclaim February 7-14th as Congenital Heart Defect Awareness Week.
Whereas, congenital heart defects are those existing at birth; and
Whereas, with familiarity of the disorder, more diagnoses are being made of what was not long ago
thought to be an extremely rare disorder and not repairable;
Whereas, CHD is among the most common birth defects and is the leading cause of defect-related deaths.
Too many babies and children born with CHDs continue to die due to the severity of the defect, the heart
defect not being detected in time, a lack of donor hearts, or failure of the medical
intervention used;
Whereas, more than 40,000 infants (1 of every 100) are born each year with heart defects in the United
States;
Whereas, CHD is being researched by numerous professionals (at least 35 defects are now recognized) in
order to more accurately describe its origin, physical signs and symptoms and surgical options;
Whereas, it is important to raise awareness of this disorder, so that the likelihood of early diagnosis and
intervention will increase;
Therefore, I, _________________ Governor of the State of _________________, do hereby officially
proclaim February 7-14th as Congenital Heart Defect Awareness Week.
Sample Letter for Making CHD week official in all states
Dear Honorable Governor ( Your Governors Name)
Families of children with congenital and acquired heart disease, adults with
Congenital heart defects and the professionals who work with them are joining
Forces to have February 7-14th proclaimed in all fifty states as Congenital Heart
Defect Awareness Week.”
As a resident of this great state of (Your State)( your CHD realationship) I am requesting that you help us reach our goal by making an executive proclamation declaring this special in February.
I am the parent / Adult of CHD ( type of CHD and short story)
It is a proven fact that the earlier CHD is detected and treated; it is more likely the affected child will survive and have less long term health complications.
Source: March of Dimes
Here are just a few reasons why spreading awareness and educating is so very important
• Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
• Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
• Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
For more information about CHD Awareness week participants and activities,
Please visit www.tchin.org/aware.
For more information about congenital heart defects, please visit www.itsmyheart.org
I would be extremely proud if my state would participate in making February 7-
14th a special week to recognize people born with heart defects, to remember
Loved ones who lost their battle to CHD, and to honor the dedicated health
Professionals who work with us. I have included a rough draft of what I image a
Proclamation would look like.
I would be most grateful if you could send the proclamation as soon as possible
So that we can make plans for promotion and celebration during the month of
February. Our state’s participation in this event will have a profound impact on
Thousands of families and individuals. I thank you for your time and
Consideration.
Respectfully,
(your name and contact information)
Families of children with congenital and acquired heart disease, adults with
Congenital heart defects and the professionals who work with them are joining
Forces to have February 7-14th proclaimed in all fifty states as Congenital Heart
Defect Awareness Week.”
As a resident of this great state of (Your State)( your CHD realationship) I am requesting that you help us reach our goal by making an executive proclamation declaring this special in February.
I am the parent / Adult of CHD ( type of CHD and short story)
It is a proven fact that the earlier CHD is detected and treated; it is more likely the affected child will survive and have less long term health complications.
Source: March of Dimes
Here are just a few reasons why spreading awareness and educating is so very important
• Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
• Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
• Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
For more information about CHD Awareness week participants and activities,
Please visit www.tchin.org/aware.
For more information about congenital heart defects, please visit www.itsmyheart.org
I would be extremely proud if my state would participate in making February 7-
14th a special week to recognize people born with heart defects, to remember
Loved ones who lost their battle to CHD, and to honor the dedicated health
Professionals who work with us. I have included a rough draft of what I image a
Proclamation would look like.
I would be most grateful if you could send the proclamation as soon as possible
So that we can make plans for promotion and celebration during the month of
February. Our state’s participation in this event will have a profound impact on
Thousands of families and individuals. I thank you for your time and
Consideration.
Respectfully,
(your name and contact information)
Monday, November 23, 2009
Luce dello Spirito (light of the spirit)
Being a mom to a Congenital Hearts Defect Child (CHD) can take you on a journey to meet new people, have new experiences (good&bad) and find new paths in life you may not understand. Being told your child will need open heart surgery at such a young age is a journey in its self, but exposes you to so much more in the future that you may not be able to prepare yourself for.
It is unfortunate that to experience life you may find yourself in situations that hinder your spirit and possibly your faith in the truth as well as hinder your ability to try and understand your journey.
I have found that not everyone has the same outlook on things or life but that outlook does not mean you can not take the journey together for the greater cause or good.
The real question in the journey is can you set aside your differences to learn from each other and forgive. This is something I think everyone faces day to day- at home, work, social events, church, etc...
I think the key is not to assume how someone may feel or why they make the decisions to do something or not to. Ultimately listening and sharing forgiveness is key to move on and accept each other as human error people that we are. With that I think we can have a better understanding of our purpose and a way to fulfill it humbly.
It is unfortunate that to experience life you may find yourself in situations that hinder your spirit and possibly your faith in the truth as well as hinder your ability to try and understand your journey.
I have found that not everyone has the same outlook on things or life but that outlook does not mean you can not take the journey together for the greater cause or good.
The real question in the journey is can you set aside your differences to learn from each other and forgive. This is something I think everyone faces day to day- at home, work, social events, church, etc...
I think the key is not to assume how someone may feel or why they make the decisions to do something or not to. Ultimately listening and sharing forgiveness is key to move on and accept each other as human error people that we are. With that I think we can have a better understanding of our purpose and a way to fulfill it humbly.
Thursday, December 11, 2008
The true meaning of Christmas!
As we are reminding the children of the true meaning of Christmas and letting them know next year we will be celebrating with only 3 gifts as Jesus received only 3 gifts , our 6 yr old Jeotgia looks at us and innocently and asks " so Jesus only had 3 people at his birthday party"? LOL
Tuesday, December 9, 2008
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
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
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