Congenital Heart Defects

In our home the words
Congenital Heart Defects has become a fairly common term. We live with this reality daily. What we have learned is that not everyone knows about CHD’s and how horrifying  they are when they present in your child. More kids die from CHD’s than ALL childhood cancers combined. Raising awareness about this Defect is our only way to fight back. To give kids a chance through education, research and funding, and to have a place ready for them when they leave the safety of the pediatric system and enter the world of adult CHD care. I am not asking for money on this Blog, though I can certainly steer you in the direction of some great organizations that are doing some great work in the world of Congenital Heart Defects, all I am wanting to do here is to share what I know, what I have learned through harsh experience, so that more of you leave this page aware of the reality these kids face daily. Josh is only one of thousands who suffer from a CHD, there is no cure for him or any of the others but there is hope.

Visit Joshua’s Hope to learn how you can help! www.JoshuasHope.org

A congenital Heart Defect (CHD) is a defect in the structure of the heart and great vessels which present at birth. Many types of heart defects exist, most of which either obstruct blood flow in the heart or vessels near it, or cause blood to flow through the heart in abnormal pattern. Other defects, such as long QT syndrome, affect the heart’s rhythm. Heart  defects are among the most common birth defects and are the leading cause of birth defect related deaths. Approximately 9 people in 1000 are born with a congenital heart defect. Many defects don’t require treatment, but some complex congenital heart defects require medication and/or  surgery.

CHD Facts and Issues
  • Congenital heart disease (CHD) is the world’s leading birth defect. About 1 in 80-100 Canadian children are born with CHD.1 In the past, few made it past their teens. Now, approximately 90% make it to adulthood – resulting in a growing population of young adults who require life-long cardiac care.
  • Across Canada, there are an estimated 100,000 adults with CHD (outnumbering CHD-affected children). At least half face the prospect of complications, multiple surgeries, and/or premature/sudden death.
  • There are far fewer resources allocated for the care of adult CHD patients than other cardiac patients. As a result, wait times for clinical visits and surgical intervention are much longer than for other cardiac patients – leading to increased anxiety, added risk and even death.
  • In Ontario, there are roughly 40,000 adult CHD patients (and 40,000 children), but only 22 cardiologists formally trained in the care of adult CHD patients and only four surgeons with adult CHD expertise.Without special training, health care professionals often lack the skills needed to understand the complex anatomy and ongoing physiological changes of adult CHD patients.
  • Because billing rates do not reflect the time required to treat the complex medical conditions of adult CHD patients, it’s difficult for practitioners to focus exclusively on this specialty. Most are forced to supplement their income through other means.
  • There is currently no coordinated plan to transfer the medical records of CHD patient transitioning from pediatric to specialized adult care. Less than half of patients with complex congenital heart defects transition successfully; as a result, many do not receive the care they need.
  • Research in the area of adult CHD has not reached the level of sophistication observed in other areas of heart disease research – even though CHD-related research has the potential for greater impact. At the same time, peer review committees for research funds rarely include adult CHD specialists and frequently mistake the lack of research sophistication for a lack of quality or relevance. 

    A word from our Cardiologist

    ” Clearly funding is a big part of ongoing research.  Many areas of research have been responsible for the improvements already made in all aspects-diagnosis, surgical techniques and equipment, critical care and ward care and ongoing follow-up.  There is still much to be done in all of these areas.
    Awareness is also a big issue and one of the big issues now is that we graduate more and more patients to the adult world but in that setting CHD is a tiny drop in the ocean and they get little attention and resources in many centres.  Also many adults do not see the importance of ongoing care after years of care organized by their parents and thus many patients are being lost to proper follow-up despite our best efforts.  Having a much closer relationship between our care and adult congenital would help with these issues and that is a real goal that is being pursued at Sick Kids but requires lots of support and funds.”

    DISCLAIMER: When I speak about CHD’s I am for the most part referring to ‘C’CHD’s (COMPLEX CONGENITAL HEART DEFECTS) There are some minor heart defects that can be resolved with one procedure or surgery however, for the purposes of this blog they are not what I am speaking about. I am talking about the more than half of kids who are born with defects that will require LIFELONG expert care, I am talking about the kids who won’t be cured.

    Links: 
    Joshua’s Hope
    Canadian Adult Congenital Heart Network
    Canadian Congenital Heart Alliance
    Cardiac Kids
    CHD’s – Types and descriptions 
    3D CHD models

      10 thoughts on “Congenital Heart Defects

      1. Hi Laurie, my son Jack was born on June 12, 2012 and has had two open heart surgeries (1 wk and 6wks) at SickKids. When they gave me the diagnosis at my 20wk ultrasound I knew I had to do something. I feel like I need to give back and do whatever I can to help, but I'm spinning in circles here. I'm currently organizing a fundraiser event here in Hamilton but I'm not sure of what organizations are out there. Thank you for your amazing blog and I can't believe it's taken me this long to find you : )

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      2. Paula,First – I am sorry to hear about Jack, it's not easy to watch a new little person that you love so much suffer something as horrible as open heart. That being said, what a beautiful little miracle you hold!! I am so pleased you found this blog, I love hearing from people and sharing the stories of other kids with CHD. February is CHD awareness month and I devote the blog to that purpose, raising awareness. There is a LOT to be very hopeful about!! Read the post I wrote today and you will see that research is booming right now in the Cardiac field and there is hope for kids like Jack and Josh. Hang in there! The best advice anyone every gave me while I was pregnant with Josh was to remember that I am a key player on his medical team, I am his advocate and his the one person who has been with him everyday, through every procedure, every test, every dose of medicine, every scan, every surgery, every single bad moment and all the good moments… I know more about his health than any nurse, and as his advocate it's my job to fight on his behalf. As Jack's Mum, this goes for you too. 🙂 Keep in touch!!Laurie

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      5. I have decided to make this post or testimony public. My husband was diagnosed with Alzheimer’s ten years ago. I loved my husband very much, and it was heartbreaking to have him develop Alzheimer's disease and to stand by and watch him decline in his ability to take care of himself, struggling with day-to-day tasks. It takes away his memory and eventually the ability to do basic tasks. Alzheimer’s doesn’t just affect the person who is diagnosed — it also turns your world as a caregiver, upside down if your loved one is grappling with the condition. To be clear, there is no pharmaceutical medicine, no magic pill that has any significant effect on the progressive downhill course of this disease. Not until we use an Herbal Medicine called BRONGEE that puts an end to it. He has been well and living his best life. While there may be other different options. Never make your own success path a secret. There should be no shame. Contact Dr. Rohan with dr.rohanronjohn@gmail.com, It may also help you too. 

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