CCHA? What's that?

Time is running out in February, it seems that while this is supposed to be the longest of winter months in terms of feeling like it will never end; it is indeed the shortest when it all boils down to days. I have been working with dodgy internet so my posts have been few but when I see the light for internet come on I do my best to provide as much information in as little time as I have. Not easy I assure you.

Today I am going to tell you about an organization that I have talked about a few times in the last few posts. The CCHA (Canadian Congenital Heart Alliance) was founded in 2004 by Adult survivors of CHD; after a few false starts which included the much too early death of their co-founder) they achieved their charitable status in 2006. The primary aim of the CCHA is to improve access to care and the level of care for all patients with CHD, both old and young so that they can live long and healthy lives. It began with a meeting hosted by Dr. Gary Webb, the director of the Toronto Congenital Cardiac center for adults at Toronto General Hospital. The main topic of conversation was  to tell these patients about the clinic (one of the top facilities in the world) and to let them know that due to lack of funding the clinic was in danger of closing. 

"He said we had to start advocating for ourselves because the government, heart and stroke, and other decision makers weren't paying attention. That was a real wake-up call. None of us had a clue about the politics behind our doctor appointments. I am sure none of us had ever given funding, or the lack of it, a second thought. After our meeting four of us got together and the Canadian Congenital Heart Alliance was born" - Shelagh Ross - President of CCHA

Shelagh, an adult survivor of CHD left Sick Kids in 1981 and like most adults with CHD, she fell through the cracks in the system for almost 17 years, until finally at age 33 she found herself in an ambulance headed to Toronto General Hospital, she was suffering from Ventricular tachycardia (a life threatening arrhythmia) she had been seeing a cardiologist annually and every year she heard that she was 'doing great', but in fact her pulmonary valve was seriously leaking. She had no idea at the time that the Toronto General Clinic even existed. 

The  situation at the Toronto clinic has improved a lot, but there is still a long way to go before the level of adult care is on par with that of kids. That's not to say the expertise isn't excellent but just that there isn't enough specialists and not enough clinics. The vast majority of adult patients are not being followed by one of the 15 adult CHD centers and many fall through the cracks when they transition from their pediatric center. 

"We are trying to get the message out that CHD is a lifelong disorder, and that kids aren't 'fixed' by surgeries, interventions like catheterizations, medications, pacemakers, and/or defibrillators." says Shelagh Ross . The trouble is getting people excited enough to be involved because unless you have CHD or you are a parent of a child with CHD you are not going to get it. CHD lacks the fear factor that some of the other more high profile diseases have. CHD patients often look healthy so it's an invisible disease, something that as a mother to a son with CHD I have come to know only too well. How many times have I heard how good he looks, how healthy, when in fact it's a constant source of worry for us. They repair during surgery, they don't cure. These aspects of CHD are all reasons for the lack of funding, the CCHA is trying to raise the profile of CHD so that things can change, so that they can reach those patients who got lost in the system post pediatrics and get them to follow-up at a specialized clinic and receive the care they need; so that the kids coming out of pediatrics in the future will transition smoothly into adult care, and so that young cardiologists can specialize in CHD care. With the survival rates for CHD climbing the need is growing critical for adult patients.

"It always surprises people when I say that there are an estimated 180,000 Canadians with CHD, 100,000 with Parkinson's, 75,000 with MS, 58,000 with HIV/AIDS, 50,000 with Cerebral Palsy and 3,600 with cystic fibrosis - but you almost never hear of walks or runs or fundraisers of any kind for CHD. Most people assume that the Heart & Stroke foundation includes CHD as a part of their mandate, but it doesn't."  - Shelagh Ross

Another road block to care is that most parents get involved with their child's hospital and direct their funds through those channels. This is something that I, as a parent have done in support of Joshua. The problem of course is that paediatrics only last until they are 18 years old. We need to get working to improve things for the growing number of survivors, many of whom will need specialized care in the future. More and more children with complex heart conditions are surviving and the adult system is  not set up to care for them.

What can you do? Shelagh Ross says that the Canadian Congenital Heart Alliance is trying to get more and more people engaged and concerned, that they are asking people to contact our government, hospital administrators, create fundraising events with them so that they have the resources they need to spread awareness across the country.

"I would like to see us grow into a really powerful national organization that supports and advocates for patients of all ages, and their families. I would like to see us lobbying for or even funding CHD research, and developing programs that deal with the psychosocial issues patients have (anxiety, depression), and the healthy living issues that so many patients struggle with (lack of activity, obesity). There is just one psychologist in all of Canada dedicated to helping adults with CHD and she is in the Toronto clinic, there are no social workers that I am aware of." - Shelagh Ross

On a personal note before I close this post I want to say thank you to Shelagh Ross for taking the time to answer all my questions, and for reaching out to me and offering me a place to share my voice on behalf of Josh and other CHD patients. Please, feel free to check out their website and find out more about how you can help change the face of CHD for adults as well as children.

 

Check it out!

Hope on the horizon

Today I had the absolute pleasure of finally seeing an article in the Toronto news (Globe and Mail) that featured CHD and the crisis that has arisen in our country when it comes to the care of it's adult patients. It was like a balm to the soul to see it in print, to know that someone other than me cares, to know that it's a problem that people are trying to have addressed. It gave me; in a word. HOPE.

I was talking to my Dad about raising awareness for CHD and how frustrating the process was. I shared how annoying it was that no one seemed to care, least of all was the media or anyone who could actually have a larger voice than mine - a mere heart Mom. My Dad is a PR specialist and has YEARS of experience with the media, fundraising, news, journalist, along with any manner of issues revolving around communications, he even wrote a book called 'the media and the message' for organizations on how to cope with the media. He's an expert in crisis management and has dealt with all manner of 'crisis' situations in many number of organizations and company's; I tell you this because of all the people who will know and understand my frustration it is going to be my Dad. What he said to me was this... 'sadly, getting people interested in CHD is going to be like Chinese water torture - You just have to keep plugging away at it'. Not hopeful, but certainly I understand what he means.

So, you see why I am excited that a story was picked up in the news??

Here is is:

Living with Congenital Heart Disease

CCHA

This video pretty much explains it all. It's also a video for an organization that I am now going to be helping with raising awareness. The Canadian Congenital Heart Alliance. Very happy and excited to be asked to join this organization! Check out the website and learn more about CHD!

if only for a moment

I am a having a hard time today, thinking about Valentines day and hearts and flowers and all that stuff, putting together my research surrounding CHD awareness... I had a plan for today, a plan for a special post about raising awareness of CHD. Today took a turn though and I can't seem to find the brain power to switch gears back to the task at hand.

Most of you know that last year Josh attended a school for kids with special needs, well, this year Kaleb also attends the school in the integrated class (a class with both special needs and high functioning kids). Today we learned that a little boy in Kaleb's larger class passed away in his sleep on Tuesday night, his parents made the horrific discovery yesterday morning. All my thoughts on CHD awareness blew out the window. The cynical part of me thinks "who cares anyway?". The reality is that hearing this just brought to mind my own worst fears and nightmares.

Last night our small group finished the book revelations... it's been a long study but the fact that we ended last night seems fitting. Today as I heard this news all I could think about was what heaven will look like for these wee little people who have been taken too early. No more pain, no more suffering, no more sadness, no more scars. How many times have I sat thinking about what that will look like? How many times have I wondered what heaven will be like? Too many I am afraid, to count.

Death is as I have mentioned 'a given' in this life. We were born and then we started to die. That's just the way it is. However it doesn't ease the pain for those left behind, it doesn't ease the fear for those saying goodbye. As we finished revelation last night we were asked to think about how this reality (that heaven awaits us) will affect our daily lives. As I processed this news today I realized that it will make me love, it will help me forgive, it will help me to be compassionate, less focused on me and more on those around me. Death is inevitable, but we must still live. I will one day die. My children will one day die. My husband will one day die, everyone I know and love will all die. What we have now, is today. This moment is the only sure thing in life. It doesn't matter if you have CHD, or if you slip peacefully away in your sleep or die in a terrible tragic accident. That is all in the future. Right now, this moment you have life, and we all too often forget that. The only guarantee we have is what we have right now. Right now I have a son who just moments ago said 'Gross' when I kissed his cheek, and then said 'kiss my lips mummy, that's better'. Will CHD kill my son? Probably, but what I sometimes forget is that he's not gone yet. Worrying, fearing about when that might happen is hopeless. I need to embrace him NOW.

I heard the other day a saying 'Faith and Fear have one thing in common. They both ask you to believe in something you cannot see.'

Today, on this day of celebrating the people you love, remember to enjoy the NOW with them. Hug them a little tighter, tell them with words and actions that they matter because you just don't know how long you have with them.

I won't be posting a picture today, my heart is heavy and sad and I can't think of an appropriate photo to go with those feelings. Instead I leave you only with a post and a prayer... that those of you who are suffering loss today, for those of you who ache, for those of you who fear... that you will find peace today, if only for a moment.

Sick Kids

I have been hearing about Sick Kids since I was a little girl, I have seen thousands of commercials raising funds, I have gotten all the brochures for the Sick Kids lottery. Yet, until I was booked into the Fetal Echo lab at Sick Kids I had never really thought too much about it. The hospital ads, the lottery, the stories, they all seemed so far removed, it happens to other people. Knowing that it can happen to you changes things. When Josh was born he was stabilized at Mt. Sinai and then rushed to Sick Kids, and I began to learn about this amazing hospital. The staff, some of whom have gotten to know Josh and us very well are warm and loving. The have on occasion even heard we were in the hospital and come looking for us to say hi. If I show up at the asthma clinic with Kaleb (the asthma clinic shares space with the Cardiac Clinic) all the doctors and nurses see me and with a panicked look on their face ask me why I am there, if Josh is okay, if Kaleb is okay. They are specialists, in not just Cardiology but with kids and with parents. The information I am giving you today (again in honor of CHD awareness month on this Blog) is about the Labatt Family Heart Centre.

The Labatt Family Heart Centre was established in February 2007. The extraordinary generosity of the Labatt Family allowed the former Cardiac Program to move forward with a series of important internal initiatives, funding the redevelopment and future activities of the Heart Centre at The Hospital for Sick Children. (The Cardiac Critical Care Unit - CCCU is the only specialized Cardiac ICU in the country)

VISION

We will be the best paediatric and congenital heart disease centre in the world. CURRENT STATE  The Labatt Family Heart Centre brings together significant interdisciplinary and interprofessional activities within Paediatric Cardiology, Cardiovascular Surgery, Cardiac Critical Care, Cardiovascular Research and Adult Congenital Heart Disease programs, thus allowing the Heart Centre to address the needs of patients and families from fetal life through to adulthood.



The Heart Centre at SickKids promotes these activities through seamless integration of research activities, academic performance and exemplary clinical care.  Membership within the Centre consists of SickKids' clinicians, researchers and educators from nursing, medicine, surgery, perfusion, respiratory therapy, physiotherapy and occupational therapy, social work, child life, diagnostic imaging technologists, and pharmacy. Additional membership is drawn from outside SickKids and includes adult cardiologists from the University Health Network (UHN), Mount Sinai Hospital and Hamilton Health Sciences as well as paediatric cardiologists in London Health Sciences, McMaster Children's Hospital , Children's Hospital of Eastern Ontario (Ottawa), and Kingston General Hospital.

Key linkages with other proposed centres (Genetics, Cancer and Blood, Healthy Breathing) will further enhance the integration of the Heart Centre within the framework of the larger SickKids Community.  Many other professional and ancillary groups participate in Heart Centre activities with a greater or lesser clinical, research, and/or administrative relationship.

Cardiac Imaging, while remaining under the auspices of the Department of Diagnostic Imaging, is an integral part of the Heart Centre, as is Cardiac Anaesthesia, under the Department of Anaesthesia. Similar healthy collaboration exists with the Division of Genetics, the Division of Respiratory Medicine, the Division of Neurology and virtually all of the other subspecialties.

The complex nature of congenital heart disease and its genetic and syndromic associations require a multidisciplinary and collaborative approach.  We are the largest member of the Pediatric Cardiac Network of Ontario (PCN), a provincial forum which has become an important part of the organization of children's cardiac services in Ontario.

Through this forum, via a variety of means, i.e. regular telehealth conferences with cardiologists and surgeons from London, McMaster, and Ottawa, referral of patients, discussion of problems, and regular patient follow-up are all achieved between the groups.

There is also a network of community Cardiologists within Toronto. Each of these individuals work in a collaborative and supportive manner. Several provide part-time echocardiography staff coverage within the Echo Lab, and all attend our clinical meetings for continuing medical education, referral of patients, and development of research studies. New patient referrals to SickKids, and known patients requiring pre and postoperative follow-up, are triaged to our community cardiologists along well established guidelines, significantly reducing the outpatient work load at SickKids.

FUTURE DIRECTIONS

Our vision of premier international excellence is based on the four pillars of our mission:      Unsurpassed, measurable patient outcomes     Innovative, practice-changing research     Superb education, training and quality of work life     Exemplary patient and family satisfaction

Feel free to visit the website, learn about what great things Sick Kids is doing, and how you can get involved!

What if?

We all know that at some point something is going to wrong with our health, the health of those we love and that someday we will all die. That's a given. What's not a given, or shouldn't be at least, is the thought of it happening to your child. It's always a bigger tragedy if you hear of a child dying, being in a car accident, ski accident, drowning or violence of any kind. Children are sacred to us, we hold onto them, our jobs are to protect them. Just recently the world's heart broke when the news of the terrible tragedy at Sandy Hook elementary spread. Parents around the world who heard the story immediately thought of their own kids, and that night most gave them an extra kiss and a longer hug.

Think about it. For a moment I want you to allow your mind to go there... what if your child got sick? What if they were taken too soon? What would you do? Where would you go? What would your life look like? Most parents don't even entertain those thoughts, most parents don't need to, not even when they hear horrific news about someone else who lost their child. The thoughts are just too terrifying to properly imagine, too horrifying to entertain for any reasonable amount of time. Instead we choose to hug them harder and try to see the blessings rather than than the fear.

I speak about this because I know. I know what it is like to sit in an empty nursery and wonder if there would ever be a baby crying in that crib again. I know because I have had to kiss him on the cheek and say goodbye when they told us there was nothing more they could do. That is what I want to write about today, the fear that comes from an illness like CHD, and the hope that can found there.

Josh's first open heart was not until he was 6 months old, it followed 2 catheter procedures and a stroke. He went into the OR a happy, chubby, sweet little baby boy. He came out scarred, blue and clinging to life. The surgery didn't go as well as they had hoped and actually caused further damage. That was on Monday July 21st 2008, on the Friday morning following his surgery he was totally lifeless, arms and legs were blue and cold and to the naked eye he looked like had already died. I held him as the doctor told us that the only other option was to go in for a second surgery, with tears in her eyes she said "I'm sorry". The reality of it was simple. He was too weak to face another open heart and we both knew it. He was rushed down to the CCCU (Cardiac Critical Care Unit) and we were told he would be prepped for surgery. Hours later, thousands of prayers later, the surgeon came and told us that they just didn't want to go in for more surgery. He was too weak and they didn't think he would survive it. Instead, they wanted to wait, keep him on life support and have the weekend to reconsider their options. To me, it felt like it was answered prayers, like my goodbye might not be a goodbye after all. I think of all the hard weekends I have had in my life and none of them come close to that one. It was like I went to hell for the weekend and was given the grand tour. Every hour felt like a month and every day felt like a year. There were so many scares, so many times when his saturation levels dipped to deadly lows and we again had to prepare our hearts for the worst case scenario. On Monday morning, July 28th, the doctors came to us in the CCCU waiting room and proposed an idea. Instead of surgery they would first try a catheter procedure to place a device in Joshua's heart and repair the damage done during the surgery. While he was in the Cath. Lab they would run a test and if the test worked they wouldn't need to do the surgery. If it failed they would take him straight to the OR. We agreed, signed consent and once again we said goodbye to our little boy. I should tell you that it was the longest wait of our lives but it wasn't. We spent the time praying, and before long the surgeon reappeared. My stomach quivered when I saw him but he smiled at me and I felt peace. The test that day went well, the device was implanted in Joshua's heart and will remain there. We went to see him an hour later in the CCCU and for the first time in his life was pink.

Living with CHD is a day by day sort of life. It forces you to think 'now' and not 'one day' because you really don't know how long you will have. When the doctors tell you that you have 6 more months until the next ECHO you rejoice because you have 6 more months for someone to do more research, to come up with new ways to help, 6 months for funds to be raised, 6 months for people to be trained, it means you have 6 more months with the child you love so much it hurts. This is why I care so much, this is why I clog up twitter and facebook every time Heart month comes along.

I didn't lose my son, every day I thank God for more time with him. I am one of the lucky ones, and that is something else I know. There are many parents who have faced the worst that CHD can do and lost the battle, there are parents even now who work tirelessly to raise awareness, raise funds, change laws so that it what happened to them won't happen to us. I thank God for them and for the little warriors that didn't make it and I pray daily for the survivors, that there will be 6 more months for them too.

The device in Joshua's heart, the one that saved his life that Monday in July 2008; it was only created five short years before. If not for the research being done we wouldn't have Joshua with us today. There is hope, but first MUST come knowledge.

My guys are helping raise awareness this year! Will you join them?

In all my research I am finding that Canadians are not as involved in CHD awareness. There are Moms out there dedicated but the media is a tough nut to crack and though districts and communities are declaring February 14th 'official' CHD awareness, the sad reality is that still most media are not getting involved. I would like to see this change... as would my guys. I need your help with this like never before. COME ON CANADA! We are a proud and mighty nation, we can be LOUD when it comes to hockey, Tim Hortons, our toughness against the weather... I am asking you to GET LOUD for our heart warriors too! Help me out. Share the posts about CHD awareness and help these two little men with their cause. It matters... it's not a funny joke, they aren't trying to get a puppy, they don't want a trip to Disney land if they get 1 million likes... they just want you to know about CHD, what it is, what it does to the kids affected, what you can do to help. Josh wants it for himself, so that he can grow up big and tall and one day be a fireman or a hockey player (depends on any given day) and Kaleb wants it for his big brother, because he loves him and considers him his best friend.  Me? I want it because there are more kids out there than just mine, more little brothers and sisters who want to have their sibling around for the long haul, more kids who know all to well the pain and suffering of living with CHD. Kids who are not yet born who could have their lives saved with early screening and proper care, and I want my son to grow up and find that there the health community cares about him and has the ability to help him when he's ready for it.

Meet Logan

One of the great things about this blog is hearing from readers who have similar stories to share, parents who are coping with the same terrifying defects and know too well what CHD can do to a family, and hearing about the amazing kids who are braver than they should have to be. This month I will share some of these stories with you, this being the first. 

Submitted by Logan's Mother

Our lives were shattered with the utter of four little words, “I hear a murmur.”  As our pediatrician looked up from our two week old son and began to explain how I needed to take Logan down the hallway for a few tests I found myself in complete shock.  In total disbelief that this was even happening I felt numb.  I simply followed orders and walked down the hallway with my mom to get Logan an EKG and chest x-ray.

What was supposed to be a happy day filled with our new baby boy’s two week well child checkup, a photo session with our three year old and his baby brother and fun time with Grandma quickly turned into every parent’s worst nightmare.  When the tests were complete we returned to the office to await the results.  Making the phone call to my husband who was at work was not only emotional but very difficult.

In a matter of minutes your life can change forever. 

Three days later we found ourselves sitting in an exam room at the Children’s Hospital, an hour and a half away from our home, reeling from the news we had just been handed.  We received confirmation that something was indeed wrong with our baby’s heart but what we thought was just a Ventricular Septal Defect turned out to be much more severe.  Our precious little guy not only had a VSD but he also had D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and a Right Aortic Arch.  All of which were killing him.  His oxygen saturations at the time of his diagnosis were in the 60’s and he was in heart failure.  He required immediate intervention in the pediatric cath lab to save his life.  Those final moments that I rocked him before they took him into the cath lab were the most agonizing moments of my life.  I was devastated by his diagnosis, fearful of the unknown and terrified of losing him.

After many tears and several hours later he came out of the cath lab and was placed in the NICU.  For the next three days we were thrust into what seemed like a foreign land with a foreign language.  We had to learn medical terminology, take CPR, understand Logan’s new cares and come to grips with everything his future would entail.  It was overwhelming emotionally, physically and mentally.  Yet we were so unbelievably thankful to have our baby boy still with us.

We were able to take Logan home for two weeks before it was time for his first heart surgery. 

When Logan was five weeks old he had his first heart surgery, the BT Shunt.  Handing my baby over again to the arms of strangers was incredibly hard.  I was a wreck the entire time he was in surgery and praying that he would make it out.  Several hours later he did and seeing him for the first time after surgery was quite traumatic.  They show you pictures in a book prior to surgery to try and help you to cope with all of the things you are going to see post op but it doesn’t even come close to what it is actually going to be like.  The many, many machines pumping lifesaving mediations through his body, the ventilator helping him breath, the shocking scar running down his chest, the constant beeping of monitors, chest tubes protruding from his chest, and his little lifeless body laying there unable to move or open those big brown eyes.  It was absolute torture not being able to pick him up and swaddle him in my arms. 

Logan spent the next 31 days in the hospital suffering many complications and setbacks along the way.  He had focal seizures, bloody stools later determined to be caused by a protein allergy, breathing difficulties and a severe oral aversion that led to needing a feeding tube.  Being away from our three year old son, Wyatt, for so long was hard on all of us.  He came to visit on the weekends but it was so upsetting to him and us every time he had to leave.  All we wanted was to be together again and once Logan was stable enough we did.

Logan was still very sick when he came home.  He was on many heart medications, had severe acid reflux, a severe oral aversion and a feeding tube.  We spent a lot of time the next eight months going to see our pediatrician and traveling for cardiology follow-ups.

When Logan was ten months old he had his second heart surgery, the Rastelli.  This time around we were more prepared and took the speed bumps along the way post op a little better.  His recovery time was much shorter despite developing a cyst behind his vocal chord that required laser removal so he could breath, trouble coming off of milrinone and a mystery infection.  During the Rastelli surgeons replaced his severely stenotic pulmonary artery with a synthetic conduit.  Since the conduit would not grow with him we were told to be prepared for more surgery in the future to replace it as he grows.

Brining him home from this surgery was such a huge celebration for us.  It was the first time were going to be able to take him out in public, attend family gatherings and just feel like a somewhat normal family again.  Six months later, however, we were quickly reminded that the world of Congenital Heart Defects can be unfair.  We learned at a routine cardiology checkup that Logan’s conduit had a huge bulge in it and he was going to need a chest CT Scan to determine how serious it was.  When the results came back it was confirmed that Logan needed an immediate cath to see if they could perform an intervention to buy him a little more time before he needed surgery again.  We were devastated because we had originally been told to not expect surgery for a few years, not months later.  Thankfully the trip to the cath lab was a success and it bought us some time. 

Logan endured his third heart surgery when he was three years old to replace his conduit and remove a muscular growth from his right ventricular outflow tract.  This surgery was one of the hardest for me personally.  It was very different than handing over my baby that I barely knew.  This was my sweet little boy who kissed me, hugged me, shared with me his sunny little personality and was the light of my life.  The thought of having that ripped away from me was agonizing.  But Logan once again pulled through his surgery and recovery despite suffering a surgical complication known as Dressler’s Syndrome which causes fluid to develop around the heart along with other symptoms.

Since then Logan has grown into a vibrant free spirited six year old little boy who lives each day to the fullest.  He is sweet, silly and funny.  Looking at him now you would have no idea all of the things he has been through the past six years.  He started kindergarten this year and has been busy making friends, something he has wanted for so long.

Every person in our family has been changed by this journey.  While it has not always been easy and will continue to be something we have to battle every day in the future as Logan will require more surgeries,we wouldn’t trade it for anything.  It has made us who we are, brought us all closer and taught us so much about what is really important in life. 

We are incredibly thankful for each day we have been given because we know how close we came to losing everything.  At the time of Logan’s birth it was not routine practice to receive a 20 week ultrasound in my OBGYN’s office to screen for heart defects.  It was also not routine practice to have a newborn baby screened for heart defects before leaving the hospital using a pulse ox.  Not a day goes by that I don’t think of how things could have turned out so differently because our baby came home undiagnosed with life threatening congenital heart defects.  Thankfully due to the efforts of so many amazing heart moms this will one day no longer happen.  Legislation has happened or is currently in the works in many states to make pulse ox screening mandatory on every single newborn.  It is a wonderful feeling to know that one day no family will ever have to find out about their child’s heart condition until it is too late.

Our family had the amazing opportunity to be filmed for a documentary on congenital heart defects called The Heart of the Matter that was produced by TMK Production and The Children’s Heart Foundation.  It made its televised debut on PBS stations across the United States last summer.  If you have yet to see it you can watch a trailer for the movie by visiting http://www.congenitalheartdocumentary.com/

To learn more about Logan’s journey and to follow our family’s story visit our blog at http://www.whenlifehandsyouabrokenheart.blogspot.com

5 questions

This has American statistics but the questions you should ask hasn't changed.

Finding out about CHD was not a choice for us as a family. Until Joshua came we had never heard of congenital heart defects. When I heard the term 'birth defect' I imagined a woman I saw once when I was a kid who had a tiny hand coming out of her elbow. I had no idea the devastating things that can happen to a baby while in the womb. My biggest concern on learning that I was pregnant was miscarriage, once I made it to the second tri-mester I breathed a sigh of relief and began to get really excited. We were asked if we wanted to do any genetic testing, for different types of syndromes etc. but we said no, in our mind the child was there, why worry what might happen when he was born? Neither Tim nor I believe in abortion as a choice, so why stress more tests?

The one thing we really did want to know, mostly because neither of us are very patient people, was the sex of our child. I can't tell you how excited I was for that ultra-sound. It was something I counted down to, anticipated more than my birthday (a huge deal for those of you who don't know me) and when the day came I couldn't contain my excitement. We had a name picked for both sexes, Kiera for a girl, or Joshua for a boy. Tim and I both hoped for a boy, maybe that's wrong, maybe we should just have hoped for a healthy child, but we both longed for a son. When they showed us his 'package' (the technicians word not mine) we both cried with joy. This was our Joshua. We saw and heard his heart beat, not knowing that it was a broken heart we heard.

Just a week later we got a call asking us to go for a stage two ultra-sound, there was a small chance of a problem they said, 'probably nothing' but they wanted to make sure. So Tim and I made an appointment and off we went. A week after that we were asked to go to the Fetal ECHO lab at Sick Kids in Toronto. We were again told 'it's probably nothing, let's just be sure."

As you know, this was the day that we came to know of Joshua's heart defect. This was the day that we learned first hand what CHD is. My prayer is that you hear about CHD here on this Blog, and not in a hospital.

If you are regular readers to this blog then you have heard the story before, but bear with me for a moment. I have a purpose to rehashing this particular tale.

There is nothing worse than hearing a doctor tell you that your child is sick, nothing worse than hearing him say 'there will be no miracles here', nothing worse than staring death in the face and having the professionals say there wasn't much hope, that you should abort and try again. 

This post is about hope, hope that we found because there are people out there doing research for CHD, people who are doing what they can to improve the chances for little boys and girls not yet born. Joshua is now a statistic in hope. He's proof that there are kids who can survive an early birth with a heart defect. However, and this is important... he's also evidence that early detection can save lives! If we hadn't known about his heart defect Joshua would not be here. I would be visiting a cold grave each week rather than getting warm snuggles and soft kisses. I am not trying to be dramatic, I am just simply trying to make my point clear. One of the reasons I feel so passionate about CHD awareness is because people, young men and women having children, need to know about early detection. The more knowledge you have the better the chances that your baby CAN live!

I don't know how many times through out the pregnancy we thought we he would come early, each time they would say to me 'we need to take him today' (he was technically viable, if not for the heart defect). Each time we would ask for a pediatrician to come in to advise us on what to do, and each time the Dr. would say 'with his condition he would not be viable'. The other doctors who had wanted to take him early would dig in and do their best to keep him where he was so that we could have more time until he became 'viable'. Finally, when Josh was five weeks early they had no choice to take him. As you know from the last few posts, we should have lost him that night. If not for the amazing team at both Mt. Sinai special pregnancy unit and Sick Kids in Toronto we would have lost him. By all accounts we should have lost him.

There are many reasons to educate yourself on CHD's, to educate those around you. Early detection is just one of those reasons. I ask you again, to consider sharing this post with those you love, with friends, followers, twitter-nation, whomever you choose. Please, don't just read this and move on to the next posting of interest. Share it, and help us to raise awareness.

What's the point?

Josh is clearly a blessed little boy, just read this blog and you will know that as his parents we feel he has and is receiving the best possible care through Sick Kids hospital in Toronto. He has already survived 5 years longer than he should have and he's only 5 years old. So the question that begs to be asked, why the need to raise awareness for CHD (congenital heart defects) at all? What's the point?

This month I will make it my mission to help you understand why I feel it's my job to help raise awareness, and more importantly I hope to get your help. My request is simply this. Help me get the word out, share the posts, email them to friends, tweet them, hook them up with the Path, post them on Facebook. There is a serious lack of knowledge surrounding this defect, and it's costing lives.

I have said this before, but I feel one of my main jobs as the parent of two boys is to see them 'safely' into their futures. What I have discovered on this journey of understanding Joshua's heart and medical care is that though he is blessed now to be in a beautifully designed system that cares for his every cardiac need; this will not be the case when he is released into adult care at 18 years of age.

With the advance of medicine in the last number of years the kids who are born with CHD are surviving into adulthood (obviously great news!), and so the care of Adult CHD patient is very young in it's development. In many ways this is a baby system, and I don't want anyone to lose their child (because no matter how old they are, they are always your child) to a system that is flawed, by lack of funding, research and staff.

Let me break something down for you:

12 Canadian children are born each day that have some form of CHD

180,000 estimated Canadians (adults & kids) are living with CHD right now

100,000 estimated Canadian adults are living with NO program equivalent to that provided for children or people with acquired heart disease.

There are only 5 regional facilities that have been identified as 'regional center of excellence' (with CHD specialists)

There are only 22 Cardiologists in all of Canada who have been specifically trained in the field of adult congenital heart defects

Pretty much sums up my concerns right? How can I do my job as Josh's Mum properly if I don't do everything in my power to see those numbers change before he reaches 18 years old. What good is it to help him arrive at 18, only to lose him into an adult system that isn't ready for him?

As the month progresses you will learn more about the issues surrounding the adult system, the needs, the areas of concern, and the ways that we as a community can help.

In the world of social media, where you will share a funny picture, an ad or contest without thought or hesitation I ask that you take a moment to share this as well. Help me, help Josh and the 12 babies born today with CHD, help the 100,00 adults in our country who are not receiving the care they need in order to live long and healthy lives. The faster we raise up as a nation and ask for a better system, the more the youth heading into the field of medicine learn of this desperate need, the more the adults with CHD learn about the defect they have, the better the chances for change.

Thanks for your help.

Happy Heart Month!