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
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."
Links:
Joshua's Hope
Canadian Adult Congenital Heart Network
Canadian Congenital Heart Alliance
Cardiac Kids
CHD's - Types and descriptions
3D CHD models
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 : )
ReplyDeletePaula,
ReplyDeleteFirst - 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
Hi Laurie,
ReplyDeleteThe Canadian Congenital Heart Alliance would love to have your help raising awareness. If you're interested please send me an email - communications@cchaforlife.org. Thanks!
Star Hospitals is the best place for Cardiac treatments .And many people has been treated very well. /.
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Thanks for sharing such beautiful information with us. I hope you will share some more information about congenital heart. Please keep sharing.
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Hi everyone, this is good news, a perfect and greats one. My daughter of
ReplyDelete38years who has suffered of Huntington's disease for 2 and half years has been
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Read carefully, it's said that Huntington disease has no cure, yes with western medication but not with herbal medicine, my daughter's situation made me to realize that with doctor Bharat herbal medicine it can be cured. In 2014 she experienced difficulty in concentrating, memory lapses and depression, at first I taught it was stressed from her place of work until I took her to hospital and the doctor made me to understand that it's juvenile Huntington disease because she is still in her late 20s, which she inherited from my late husband that died of the same disease, the doctor told me it has no cure, but gave her some medicine which I noticed that it has side effects, my daughter situation got worst each day that passes, she was the best at her place of work, now a shadow of her self because of this deadly disease, she speaks to herself often, she was really going insane, I do not want to lose my daughter the same way I lost her father, in 2018 I carried out research on internet and bumped into a comment of a lady that got cured of Huntington disease, without wasting time I contacted doctor Bharat whose name was mentioned in the comment, now is been 3 years my daughter is living her best life again, for those that have the disease or have any love one suffering from Huntington disease, contact doctor Bharat via dr.bharatkings@gmail.com
ReplyDeleteMy sister had severe Muscle problems, abnormal eye movements, Difficulty with the physical production of speech, memory lapses. she was placed on tranquilizers 3 times daily, it helped her but not very much. Her neurologist advised us to try natural treatments and introduced me to Natural Organic Herbs,.{Huntington disease Herbal formula} I visited his blogs and read a lot of positive reviews from other patients who used the treatment and made my orders. We immediately started on the treatment for my sister. she had great improvement and relief with this treatment, total decline of symptoms. All her symptoms left and she has been reserved from Huntington Disease. Great improvement with speech, co-ordination, balance, muscle, mood etc, I gained back my life with this herbal treatment and can never be thankful enough. Visit Natural Organic Herbs, reach him directly via {dr.bharatkings@gmail.com} She's now living like a normal person without any symptoms of Huntington Disease. All thanks to Dr. Bharat
ReplyDeleteMy name is Esther from Los Angeles USA, I want to shed my testimony because I know it will help some people out there. My husband Charles was diagnosed with Huntington's disease in 2017, I watch my husband living like a mad person sometimes i shed tears. After several failed attempts to make him well again, I searched on the internet for a cure but there was none, in 2019 I bump into a comment on YouTube on how Dr. Bharat cured a woman who also suffered from Huntington's for 6 years with his herbal medicine. Without wasting time I contacted him and he asked me a few questions which I answered then he prepared the medication and sent them to me here in LA with a prescription on how to use attached to it. I administered it to my husband as prescribed, within 2 months i start seeing improvements in his health and he was totally healed in 6 months, now my husband is living his best life again. You can contact Dr. Bharat via dr.bharatkings@gmail.com you will come back to testify
ReplyDeleteRead carefully, it's said that Huntington disease has no cure, yes with the western medication but not with herbal medicine, my daughter's situation made me to realize that with doctor Bharat herbal medicine it can be cured.. In 2014 she experienced difficulty in concentrating, memory lapses and depression, at first I thought it was stressed from her place of work until I took her to hospital and the doctor made me to understand that it's juvenile Huntington disease because she is still in her late 20s, which she inherited from my late husband that died of the same disease, the doctor told me it has no cure, but gave her some medicine which I noticed that it has side effects, my daughter situation got worst each day that passes, she was the best at her place of work, now a shadow of her self because of this deadly disease, she speaks to herself often, she was really going insane, I do not want to lose my daughter the same way I lost her father, in 2018 I carried out research on internet and bumped into a comment of a lady that got cured of Huntington disease, without wasting time I contacted doctor Bharat whose name was mentioned in the comment, now is been 3 years my daughter is living her best life again, for those that have the disease or have any love one suffering from Huntington disease, contact doctor Bharat via dr.bharatkings@gmail.com
ReplyDeleteRead carefully, it's said that Huntington disease has no cure, yes with the western medication but not with herbal supplement, my daughter's situation made me to realize that with doctor Bharat herbal supplement it can be cured. In 2014 she experienced difficulty in concentrating, memory lapses and depression, at first I thought it was stressed from her place of work until I took her to hospital and the doctor made me to understand that it's juvenile Huntington disease because she is still in her late 20s, which she inherited from my late husband that died of the same disease, the doctor told me it has no cure, but gave her some medicine which I noticed that it has side effects, my daughter situation got worst each day that passes, she was the best at her place of work, now a shadow of her self because of this deadly disease, she speaks to herself often, she was really going insane, I do not want to lose my daughter the same way I lost her father, in 2018 I carried out research on internet and bumped into a comment of a lady that got cured of Huntington disease, without wasting time I contacted doctor Bharat whose name was mentioned in the comment, now is been 3 years my daughter is living her best life again, for those that have the disease or have any love one suffering from Huntington disease, contact doctor Bharat via dr.bharatkings@gmail.com or Whatsapp him on: +393509392854
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