Adults Living with Congenital Heart Defects

Currently, there are approximately one million adults in the United States living with congenital heart defects (CHD). Due to increased survival, this number increases by about 5% every year. These numbers are significant considering that at one time babies born with CHD had virtually no chance of becoming an adult.

Thanks to surgical advances and research in pediatric cardiology in the past 50 years, most congenital heart defects have been able to be corrected. Today, babies born with heart defects have a much better outlook than they did 50, or even 15 years ago.

Olympic snowboarder, Shaun White, was born with Tetralogy of Fallot (TOF).
Olympic snowboarder, Shaun White, was born with Tetralogy of Fallot (TOF). | Source

Some of the First Congenital Heart Surgeries

Some of the adults who are alive today are survivors of some of the first open heart surgeries done in babies born with defects. For instance, the Blalock-Tausigg procedure was developed in 1944 to help infants with cyanosis or blue-baby disease. This procedure was done primarily for those born with Tetralogy of Fallot (TOF), one of the most common congenital heart defects.

Another surgery, called the Fontan was first done in 1968. This type of surgery is done for patients born with a single ventricle or a single-functioning ventricle. Today, the Fontan operation is the most common procedure performed after the age of two years. Babies born with defects requiring this type of surgery often have to go through other procedures first.

Of course, even though surgeries like those mentioned above were first performed when they were, they have gone through several modifications. Today many of these open heart surgeries being performed offer babies born with CHD's a better quality of life which in turn helps them grow into adults with a higher quality of life than the first-time recipients of such procedures.

The Need For Continual Care

Many adults who received treatment for their heart defect as a child go into adulthood thinking that they have been cured and they no longer need to worry about their heart condition. For over half of the adults living with CHD, this couldn't be further from the truth. Depending on the complexity of the heart condition the patient was born with, sometimes they need to receive ongoing care for the rest of their lives.

Adults who need continual care often fall through the cracks because either they think they have been cured and they no longer need care, they can't afford ongoing care because they no longer qualify under their parents' insurance plan or other financial issues or they simply don't know where to go. As children, many adults with congenital heart defects saw a pediatric cardiologist and it then becomes difficult for them to make the transition from a child to an adult with CHD.

Bethesda Conference Guidelines

Every year, the American College of Cardiology (ACC) conducts a meeting in Bethesda, Maryland to address important issues in cardiology. In the year 2000 during the 32nd Bethesda conference, the ACC addressed the needs of adults living with congenital heart defects. The report produced from this conference outlines many unmet health care needs facing those adults with congenital heart defects (ACHD).

The report also states that those adults born with complex heart defects should be seen at specialized ACHD care centers on a regular basis, in other words be seen by someone with experience in treating adults, not just children with CHD. Since a regular cardiologist has little training in the area of pediatric cardiology and virtually none when it comes to adults with CHD, the report suggests that even those adults born with simple defects be evaluated at least once at an ACHD care center.

There are cases where the ACHD cardioglist travels from an ACHD center to surrounding towns to see patients. For example, cardiologist at the Mayo Clinic in Rochester, Minnesota travel to other areas including communities in Iowa and North Dakota.

The Challenges of Living as an Adult with CHD

There are many challenges for some adults with complex CHD that healthy adults do not face.

Contraception and Pregnancy

Women born with a complex heart condition need to be careful about which kind of contraception is safe for them and also if pregnancy puts their life at risk. At one time it was not recommended for women with certain heart defects to have children. Now, however with the development of ACHD centers, some women can become pregnant but have to be followed closely by their ACHD cardiologist.

It is advisible that before a women starts on any kind of birth control or before getting pregnant that she talk to a cardiologist who specializes in adults with CHD.

If pregnant, women with CHD should also begin to have their baby's hearts monitored between the 16th and 18th week of pregnancy. Some congenital heart defects are thought to be hereditary.

Exercise

Some adults with CHD have to be careful about how much they can tolerate when it comes to exercising. Some patients need to have weight restrictions while others are not recommended to walk or run long distances.

Psychological Issues

Being an adult with CHD can take it's toll emotionally. Some adults have a fear of dying while others may have trouble being active because of their health. Others face depression and unresolved fear and pain. There are also physical characteristics such as scarring or being cyanotic that can be hard to deal with. Sometimes talking about their heart defect is hard to do with friends of family members. If an adult with CHD is having emotional issues because of health reasons or any reason, it is recommended they see a counselor.

Adults with CHD need to know their limits when it comes to fitness and exercise
Adults with CHD need to know their limits when it comes to fitness and exercise | Source

Education is Crucial

All adults living with CHD should be educated about their particular defect. To live as healthy as possible it is important to be educated in the following:

  • Name and details of their heart condition
  • Surgeries that have been performed
  • Frequency of follow-up
  • Medications and side effects
  • Preventing heart infections (endocarditis)
  • Exercise
  • Birth control and family planning
  • Career planning and resources
  • Insurance
  • Dental care
  • Symptoms to look for
  • When to contact their health care provider

They also need to know that minor or major surgery can present risks for the CHD patient. Special attention is needed with anesthesia and to prevent heart infections (endocarditis). Patients on blood thinners also require special care. Ideally all surgery on these patients should be done at ACHD centers.

Adult Congenital Heart Association

The Adult Congenital Heart Association (ACHA) is a "nonprofit organization which seeks to improve the quality of life and extend the lives of congenital heart defect survivors." It was founded in 1998 by a group of adult congenital heart defect survivors and their families.

The ACHA website is a great place to go for support, education and to become an advocate of research. There is a message board which is a wonderful way to find other people with similar conditions as yours. There is also information on how to get an ACHA support group started in your area.

My echocardiogram
My echocardiogram | Source

One time I had to go to the emergency room here in Bismarck. The cardiologist on call was excited because he had never seen a "Fontan patient" before. It didn't really give me a lot of confidence.

My Life as an Adult with CHD

Omy Hub "CHD - The Most Common Birth Defect" I menioned what it was like for me as a child with a heart condition. When I was going to college, I was under the misconception that the surgery I had as a ten-year-old had "fixed" me and that I no longer to worry about my heart.

It had been nine years and I was not having any heart-related symptoms. But during my sophomore year in college, I became very ill. Three doctors I had seen over a span of two months thought I had an ulcer. One day I was having a hard time breathing so my college roommates rushed me to the emergency room. It turned out I was experiencing congestive heart failure (CHF).

The doctors put me on diuretics and I lost about twenty pounds of fluid I had been retaining. I hadn't been on any medication before this, and after my bout with CHF, I was on four different medications. I struggled for the next five years and in 1999, cardiologists who specialized in adults born with a congenital heart defect told me my right atrium was grossly enlarged.

They said my adult body had outgrown the Fontan I had had as a ten-years-old so they needed to go in and make some surgical revisions. I was 25 years old when I had that surgery. Three months later, I needed to have a pacemaker implanted.

I can honestly say I've been well since then. I see my ACHD cardiologist once a year and everything continues to go well. The only thing I've had done since my last surgery is have two batteries replaced in my pacemaker. I was even able to have a baby when I was 29. She was born at the Mayo Clinic in Rochester, Minnesota.

I know there are adults with CHD who struggle with their health on a daily basis. Some are in constant congestive heart failure while others are on medications with severe side effects. There are those who are on oxygen 24/7 and even those who die at a young age.

My heart goes out to them and their families who struggle along with them. Sometimes I wonder why I am doing so well, considering my heart condition is one of the more complex ones. I think prayer and knowing Jesus as my healer has played a big part and I can only pray that I continue to do well and Jesus continues to heal all who struggle with a congenital heart defect.

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Comments 45 comments

DCBULL profile image

DCBULL 6 years ago from Washington DC or www.dcbull.com

Great article and information - thanks.

Arthur

Arthur L. Ekrem

http://www.dcbull.com


Destined To Win profile image

Destined To Win 6 years ago

Cari Jean, What a great hub containing such quality information. Also, thanks for sharing a snippet of your inspiring story.


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

DCBULL - thanks for reading. I did check out your website - Good Stuff!


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

Destined to Win - thanks for your comment. Someday I will post a whole hub dedicated to all of the things God brought me through!


Angela Blair profile image

Angela Blair 6 years ago from Central Texas

Excellent Hub. My son was born with congenital heart disease and was one of the first children in Texas to have open heart surgery when he was four. He's now 53 and although has worked at very physical jobs (roofing contractor and master carpenter) he's not had any problems. These last few months he's experiencing his heart racing sometime and skipping a beat which is attributed to pain as he has ruptured discs which need attention. His docs are now suggesting that he have a somewhat simple surgery to correct the heart rhythm and "firing" mechanism of the heart - which is day surgery. Having dealt with his heart problems since he was 18 months old I'm again very apprehensive. Like you, I'm a firm believer in prayer and faith. I've added you and your daughter to my prayer list and believe the Lord is going to take care of us. Best, Sis


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

Angela Blair - so your son is a pioneer! It's great to hear how people older than myself are doing who have CHD. It can be very encouraging. I'm sorry to hear what he is going through now - that can be kind of scary when your heart is racing or skipping beats. I understand that you're apprehensive about him going through surgery but in the end it will be worth it!

That is very sweet of you to add me and my daughter to your prayer list and I will do the same for you and your son.

Blessings!


Jackie 6 years ago

I've personally had 7 open heart sugeries and am now on my 8th pacemaker. I love what technology has done for us today and will continue to do so. I am only 25! I have a beautiful con and a loving husband! Anything is possible and so far it HAS been!


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

WOW! I'm curious to know what your condition is. It is amazing about the technology today. I think of all the babies born with CHD and how much more of a chance they have at being healthy. Thanks so much for your comment it is encouraging to know that someone who has gone through so much is doing so well. May you continue to be blessed!


guy Alexander 6 years ago

GOD BLESS YOU..I HOPE EVERYTHING CONTINUES TO GO WELL FOR YOU--MY SON HAS HLHS...BUT HE IS DOING GREAT---HE IS 10 MONTHS OLD NOW!!!


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

guy Alexander - I'm so glad to hear that your son is doing well. It is so amazing what they can do now for babies born with a congenital heart defect! I pray your son continues to do well! Thanks for sharing.


Alex Zamora 6 years ago

Hello Cari, great article. I have L-TGA (CCTGA) and pulmonary atresia. I have had five surgeries. My third surgery was in Rochester at the Mayo Clinic in 1978 by Dr. Dwight McGoon (sp?). I was his last case before retiring. Without him, I don't think I would have done so well. I have had two other surgeries since then and keep going. I am speaking at the ACHD conference in Washington this summer as a patient perspective. I am also a cardiac physician assistant. I think your comment regarding education is paramount. Without it my life would have been more difficult. Thank you.


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

Alex - I had my first three surgeries in Minneapolis but then switched to Mayo clinic where I had my last surgery which was in 1999 - Dr. Danielson performed the surgery. Currently I see Dr. Frank Cetta. It is great what you are doing with your life - speaking and as a cardiac physician assistant.

I agree about education - it seems when I was being seen in Minneapolis neither my parents nor I were as educated as we should have been which ended up making things more difficult for me as an adult. This is one reason I want to get the word out to other young adults about their condition.


Malissa 6 years ago

Hi! What a great hub! I've been looking for ways to be in touch with other living with heart conditions. I'm going to be 32 in 2 months and living with CCTGA Dextrocardia Situs Inversus. I have been feeling great, up until a year ago after the birth of my first child. I went into CHF after my C-Section, but I do have to mention myself and dr's did not know that I had CCTGA until after the delivery. Simply put when I was diagnosised at 6 yrs old, the dr's pretty much said I would live a normal life and never suggested any follow up visits, my parents took their word for it, and back then we didn't have the internet to research like we do today. Since the birth of my son, I have had OHS and my Tricuspid Valve was replaced with a pig valve. Today, my EF is 40 to 45% and for the most part I feel pretty good, some days I get pretty winded. I've just been put on a beta blocker as we were hoping my EF would have gone up higher than it is, so I'll get checked again in 3 months. For now, I'm going to live life to the fullest.


Cari Jean profile image

Cari Jean 6 years ago from Bismarck, ND Author

Malissa - thank you so much for your comment. The ACHA website is a great resource and they have a place to communicate with other adults with CHD. I'm sorry to hear what you've gone through. Many of us born with CHD were duped into thinking we were fixed cured with surgery. But I don't think the doctors really knew what to expect either. I hope that now you are seeing an adult congenital cardiologist - it is so important! Again, thanks for your comment.


Maggy 5 years ago

Hi, I am from Brisbane, Queensland, Australia. I had my surgery for tetralogy of falots in 1968 when I was 13. So that makes me a pioneer here in this country I guess.

So encouraging to read your story. You hit the nail on the head for me when you said some people are afraid of dying. I am 56 and still going, though I am experiencing difficulties. Sometimes it is hard to get people to listen, as they see a 'normal' woman in front of them. I now get a bit breathless and I look paler than I should and see the cardio once a year.

But hey, thanks a lot for your story.

Maggy


Cari Jean profile image

Cari Jean 5 years ago from Bismarck, ND Author

Maggy - my heart truly goes out to you. I hope you are doing well. I know how you feel with people thinking you are totally healthy - CHD can be sort of like an invisible disability. I hope your cardiologist is going to be able to help you with your breathlessness and paleness. Have you had a valve replacement? I know sometimes adults with TOF have get a valve replaced. I wish there was an adult congenital cardiologist where you live but I'm not sure there is. Take care and be blessed.


Pratibha.V 5 years ago

Great Article... Really i am moved... One will know the value of life only when they struggle for it.. Let God Bless All Of The CHDs with His Choicest Blessings..Because we Are The People Who Know How Precious Our Lives Are!!


Cari Jean profile image

Cari Jean 5 years ago from Bismarck, ND Author

Pratibha.V - I truly appreciate your comment. You are so right that those who struggle for life realize just how precious it is. Which may be one reason I don't dread my birthday - it is truly a celebration of life and it's one more year that the doctors never thought I would see.


Chioma 4 years ago

My daughter is only 3, she had a corrective surgery for TOF febuary 2009 at Bristol royal hospital in the UK. At the moment she's doing fine just having severe regurgitation from the pulmonary valve. Just recently she was diagnosed with NF 1. we have relocated to Australia 5 months ago. At the moment....she's on yearly checkups.....we re Christians and believe on God healing hands.


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

Chioma - my heart goes out to you and your daughter. I'm not sure what NF 1 is - I'll have to look that up but I hope she is doing okay. It's is wonderful to know the Lord and all that He can do - all things are possible with God! May HE truly bless you and your daughter.


sarah 4 years ago

Hi Cari!

I direct a children's home in India for abandoned children with special needs, and in Sept we received a little guy about two years old with a single ventricle and several other anomalies. "Max" just had a bilateral bidirectional Glenn Shunt and is doing well in ICU right now. He almost didn't get on our list of referrals from the government because, although he had an echo on file, he was labeled "normal" and would most likely have died without any treatment. His oxygen saturation was around 46-54%. Now they say he has a good chance.

Found this article while looking up his conditions. I love how at the end of your article you talk about Jesus your Healer. After this article I read your hub about pregnancy and in the comments your struggle with trusting God vs. getting medical help. I have been in that situation so many times and get discouraged that I don't see more miraculous healing in these kids. But interestingly God sometimes will give me a dream about a child having seizures, and when I take them in for an EEG, sure enough they are... Things like that.

Max will have his Fontan in a few years. Glad to see you're still doing well, Cari! Lots of love, Sarah


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

Sarah - thank you so much for your comment. I am so thankful that "Max's" heart condition was caught in time and that he was able to have heart surgery. After his fontan he will be so much stronger and have so much more energy! God must have given you a gift to help children with special needs. I wonder too sometimes why He doesn't heal them because I think of what a wonderful testimony that would be. But for each on of these amazing children he truly has a purpose for their lives. Thanks again for letting me know about "Max" I will keep him in my prayers. It would be great if you could keep me updated! Love and blessings to you.


Aisling 92 profile image

Aisling 92 4 years ago from Ireland

Hi Cari I just came across this site I am 19 years old and I'm from Ireland. I have had 4 heart surgeries for Tetraology of a fallot. Two when I was a baby, open heart surgery in 2007 when I was 15 for a pulmonary valve replacement and again in May of this year for another pulmonary valve replacement. The one I had repaired in '07 didn't work to well. Luckily my surgery this year was done through the groin so it wasn't as painful. Hopefully I will get a good few years until im back in again. It was great to come across this page I haven't been very sucessful in finding similar pages :) x


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

Aisling 92 - thanks so much for sharing. I really like connecting with others who have CHD. I'm sorry you've had a tough time with your valve replacements. I really wish you all the best and pray you have a wonderful future ahead!


Kathryn Canty 4 years ago

I was born in 1985 with CHD. My tricuspid had formed into a bicuspid, I had coarctation of the aorta, and ventricular septal defect. I had three open heart surgeries at Cook Children's in a period of 2-3 months right after I was born to repair the problems. My VSD was repaired by a patch or cloth. I'm now 26, going on 27, and I've been SO very, very beyond blessed to live a relatively normal, healthy life. I do not have to take any medications, unless its to go to the dentist, I don't have any physical restrictions, and I've lived a fuller, happier, more normal life than I think anyone could have ever imagined for me. Its almost as if my CHDs didn't happen. Though, there is a noticeable scar and I have a murmur! I have never had to have a fourth surgery, and as I said, live a rather normal lifestyle.

This site made me smile because I have never known or even met anyone who shares this similar experience. I have always wanted to find people who share my experience, because we are the only ones along, with family who was with us, who know how special we are. God bless all of you!


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

Kathryn - thank you so much for sharing part of your CHD story. It is amazing that you are living such a normal life without any medications! That is truly a blessing from the Lord. All of those with CHD truly have a story to share. I pray you continue having good health. God is good!


Edwin dass 4 years ago

Hi i am from malaysia, and i am 26 years old... I was recently diagnosed with cctga with situs inversus/mesocardia... I never knew i had this condition since birth & am clueless wad to do next. My daily life is not really affected but i have gained 25kg suddenly in the last 8months. I also feel shortness of breath if i climb a flight of stairs... Edwindass@gmail.com


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

Edwin - thanks so much for your comment. I'm not sure what resources are available in Malaysia - have you seen a cardiologist? That is the first step - preferably a pediatric cardiologist as they have more experience with congenital heart defects. It sounds like you may benefit from being put on medication. I know this isn't much, but I hope it helps. Many blessings and prayers to you.


jain b. 4 years ago

Hi iam from India.my grandson born before 6 months was with CHD as per doctors fingings. he was born with full term and og 2.7 kg.after his birth due to heart murmuring doct ask me for echo.after echo they put him under monitorong for 72 hrs in Nicu.He was with spo2 95 apx in nicu . As per docts he has TOF with pulmonary astesia. PDA dendendtpulmanory circulation &small OS ASDwith LRshunt.he was dischared without any surgical. till now after 6 months he didn't face any prblem. he is doing well weight 7kg ,. no breathlessness. feeding normally.consuming oral baby food wich started now.at present his SPO2 is 74-78. this is from 20 days after his birth. so i want to now without any problem why we should go for surgary? or as per docts advic surgical correction is a must .but if he has good growth withouta any problem what should we do.we are monitoring him . and visiting Doct for checking. But we are not told by Docts for any step for surgary at now but we are in worries what will happen. can you help us what to do. I go through your site and encourged by reading. thanks.


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

jain b - thank you so much for your comment. My heart goes out to you and everything your baby has been through. I am not a medical provider so I really don't want to give you medical advise. The only thing I can tell you is that it is important to listen to the doctors. It is tricky with congenital heart defects because even though it seems like things are going well, things can change very suddenly. If and when the doctors talk about doing surgery, I would listen to them. But you are doing the right thing by helping him grow and monitoring him closely. I will pray that he continues to do well and that the Lord will give you wisdom and guidance.


brakel2 profile image

brakel2 4 years ago from Oklahoma City, Oklahoma

Hi Cary Great article. I am glad you are doing so well I don't remember from whom you inherited your problems with your heart. I hope your child is doing well. Your faith must really guide your way to health. May you continue this progress. Your article is easy to follow and is filled with your great knowledge and resources for CHD. Good luck!


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

brakel2 - thanks so much for your comment. I don't think I inherited my heart condition - no one else in my family has had CHD. Thankfully, my daughter's heart is fine. Thanks so much for your encouragement and I know that Jesus is the ultimate healer!


Emily64 4 years ago

Hello! My 15 y.o. son Sam was born with Pulmonary Atresia with IVS. He had his first open-heart surgery (Vanderbilt) to open the PV at 26 hours old. We are now facing his first valve replacement. Doc has not told us when it will be replaced......anytime from now to he early 20s. We had an MRI last week to see if this is the summer for replacement. He is completely at peace about it. I am FREAKING out! I've become totally obsessed about it. What is the life expectancy of PA IVS? emilyelkins@bellsouth.net


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

Emily64 - I really can't tell you the life exp. of PA IVS. And truly it seems that as soon as doctor puts a number of years a person w/ CHD is supposed to live - 9 times out of 10 they are wrong. Esp. with all of the advantages we have when it comes to pediatric cardiology. When I was born I wasn't supposed to live to the age of 2. Then after my 2nd heart surgery at 4 years of age I wasn't supposed to live to the age of 13. As an adult, I have sometimes wondered if I would die at a younger age because of my CHD but it's not something I worry about. I know that God has a plan for my life and as I continue to serve him, that plan will be carried out to fruition. There is a great organization called the Adult Congenital Heart Condition and they even have a discussion forum where parents of kids w/ CHD can discuss certain topics. I know there are members on there w/ PA so I would suggest that site. It is www.achaheart.org


Katie 4 years ago

OMG I hope I don't sound creepy but my life is almost a mirror image of yours!! (except I'm a few years behind) I have a fontan too! 2 years ago I went into the hospital with congestive heart failure with no previous symptoms before that! After that they took two years to figure out what was wrong and how to fix it. I just had (my 4th) open heart surgery 2 months ago to modify my fontan and fix a few valves. I had a pacemaker put in 5 days after that open heart surgery. I'm sitting in the hospital right now (going home today) because they had to give me a cardio version (electric shock) to get my heart back in rhythm. Other than that I'm on the road to full recovery and everything should be better from now on! It's so good to hear that someone with the same condition as me who went through the same things I did is doing so well! Thank you for sharing your story! My blessings to you!


Katie 4 years ago

Hey haha I forgot to mention I'm 27! And plan on living a long and fulfilling life!


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

Katie - thank you so much for your comment and for sharing your story! And btw, you don't sound creepy - our stories are pretty similar! I'd be curious to know what your official diagnosis is. I pray you continue to do well!


brandi lynn 4 years ago

I'm 23 years old I was also born with CHD and they did my first fontan when I was a year old. I got a pacemaker when I was a 1 1/2 old. Last year April 24 I got the news that I had to have another fontan because I grew out of my past one. So I took the risk and June 24 had my surgery I almost didn't make it, not cause of the surgery but because I got ODed on morphine. But now a year later I feel great and am very thankful for all the work the St. LOUIS childrens hospital has done... God Bless


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

brandi lynn - thanks so much for sharing about your heart condition. It is great that your fontan you had done when you were just a baby lasted 22 years before you had to get another one. My first fontan only lasted 15 years.

I am glad to hear you are doing so well, despite the scare w/ your last surgery. I pray that neither of us will have to go through another heart surgery again!


mismazda profile image

mismazda 4 years ago from a southern georgia peach

Oh my bless you..what an interesting story..I hope you are doing better each and every day. This hub was informative. Thanks again for sharing.


Cari Jean profile image

Cari Jean 4 years ago from Bismarck, ND Author

mismazda - thank you so much for your kind words. I really am doing well and I praise God for that!


RhondaHumphreys1 profile image

RhondaHumphreys1 4 years ago from Michigan

Cari Jean,

I too was born with a congenital heart defect. (AVB of the third degree) I had a pacemaker implanted over a year ago so I completely understand. Your hub was very interesting and useful. Than you


Jane 3 years ago

Hi,

I grew up with my brother who had a CHD. His one and only surgery in Melbourne was publicly funded when he was 1. He outlived most of the docs expectations but is currently in his end stage heart failure now that he's in his 30s. Am wondering if there may be any hope for him outside of Malaysia as all our local doctors seem to run out of solutions/meds for him. Your thoughts will be highly appreciated.

Thank you.


Cari Jean profile image

Cari Jean 2 years ago from Bismarck, ND Author

Jane - thank you for your comment. I am so sorry to hear about your brother. I wish I had more information for you in how to help him. The only thing I can suggest is to pray that God would lead you to where you could find help for him. I'm sorry I cannot offer more.


michellesteltzer 18 months ago

Thank you for your thoughtful and transparent article. CHD has been near and dear to my family's heart for years and brings one more issue that is quite complex to the table for families trying to cope with normal life. I am working on a book called Champion Strong Hearts that focuses on the perspective growing up with an older sibling with CHD, positive outcomes and coping strategies of champion families I have encountered, and caregiver fatigue. Please take a look if interested and always open to new ideas in the process for I have not lived personally with the diagnosis of CHD, but lived alongside it for my lifetime thus far. https://youtu.be/x28BkcC9C-c

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