My infant son was born with pulmonary valve atersia, which only affects one in 100,000 individuals. Needless to say it is very difficult to obtain information about the average life expectency of individuals with this CHD. So, I was just wondering if anyone here has any information or personal experience they could share with me.
My little one is nine months and currently is doing really great, I just fear for the future. Sometimes I wonder if he’ll make it to adulthood… I just want to know the average life span of these individuals and I have been unsuccessful in finding an answer.
Thank you.
Actually a person having a Congenital Hearth Deffect has no Life span to think But…
It depends on how he takes care of himself like proper maintenance of Medicines to that effect…
I myself has an “Enlargement of the Hearth”..
I inHerit it to my Father’s but I lived for 46 years now…
There are lots of things that must be care of like bein aware of the food that we take…Less cholesterol/less sugar or sweets…
Sugar level in your blood could trigger some complications in the future…specially when your growing Old ..
Like me I’m a smoker but gradually I’m trying to Quit someday,my doctor always reminds me of danger when ever I smoke but even though I knew it I keep on smokin..
What I’m trying to let you see is it depend on the Life Style of your Child when he grows up someday…But discourage him on early stage when he learns to smoke..Better for him …
Your little one has a long way to go to adult hood so why worry too much?Just let him see how good Life is without any habbits like smoking/drinking etc…
I only stop drinking when I had my First “Hearth Attack” but the only thing I can’t help without is my Smoking but I’m trying so hard to lost it permanently for me to live longer…
Proper Guidance is the best ….
It can be frightening to learn that your child has a congenital heart defect (one that’s present at birth). But congenital heart disease is a relatively common condition that affects almost 1 in every 100 newborns in the United States. Medical knowledge, technology, and experience can offer accurate diagnosis and treatments that allow nearly every form of congenital heart disease to be treated.
Most defects today are treated with surgery, catheter procedures, and sometimes medication. Thanks to advances in techniques, surgical and heart catheterization procedures can treat congenital heart defects that once could not be treated effectively.
Cardiac surgery and cardiac catheterizations are now being performed on younger children — in fact, it’s common for them to be done during infancy or even the newborn period. This has resulted in many long-term advantages for these children.
Although nothing can be guaranteed with 100% certainty, most kids with heart problems can enjoy happy and healthy futures.
Caring for Your Child
Parenting kids with heart defects includes learning about basics like feeding, giving medicines, and watching for signs of trouble, but it also involves encouraging kids to become involved in their own care.
Because most congenital heart defects are now treated during infancy, it’s often necessary to explain to an older child what happened in the past. When your child is old enough to understand, explain why he or she has a surgical scar, needs to take medication, or needs to visit the pediatric cardiologist. Describe the treatment in a way your child can understand and don’t try to hide the details.
If kids believe they have a role in their care, they’re likely to be more confident and positive. Your doctor may be able to suggest ways to discuss these issues.
Participation in some physical activities may be limited, but kids can still play and explore with friends. Always check with your child’s cardiologist about which activities your child should or should not be doing. Certain competitive sports may be restricted, for example.
Although it’s tempting for parents to be overly protective, sheltering kids can make them feel isolated and stigmatized — which may do more harm than a heart defect in the long run. So do everything you can to make sure your child leads as normal a life as possible.
My son is 7 months old born with Tetralogy of Fallot. That’s a heart condition consisting of four defects of the heart one of which is pulmonary valve atersia. You can go to http://www.shareyourstory.org and it’s very helpful in obtaining information about your little ones heart. BEST WISHES to you and your family . I know it’s hard. You can also look at the website for American Heart Association