For many forms of CHD, surgery is not a cure. Congenital heart disease is a lifelong condition requiring specialized care, and often additional surgeries and medications are needed later in life.
From the CDC:
As medical care and treatment have improved, babies and children with CHDs are living longer and healthier lives. Most are now living into adulthood. Ongoing, appropriate medical care can help children and adults with a CHD live as healthy as possible.
Early detection of a CHD is so important because as the stat above states “approximately 25% of infants born with CHD will need at least one surgery or other interventions.”
For some of the more complex defects, there may be multiple surgeries that are needed.
Jacob had a Blalock Taussig Shunt put in at 16 days old. This was to help him get stronger for his Total Heart Repair at 6 months old. When he came home he had physical therapy to help him get stronger, as he had very low tone (hypotonia).
Jacob also had an ablation done when he was 4 years old, to help stop his SVT episodes (fast heart rate) due to his Wolff Parkinson White. He is taking Atenolol to help control.
We have annual cardiology appointments that involve an EKG and echocardiogram, and these are very stressful visits for all of us. Jacob hates to be touched, but that’s not the same for all kids. But as he gets older, he’s also getting stronger and if we can keep him calm the visits and the doctor can get great information. We know that there may be a possibility that he may need valve surgery when he gets older.
As a Special Needs Mom & Lifestyle Blogger, I am passionate about spreading awareness and acceptance for children with special needs, and to give others a glimpse into our life as a typical family with a little something special. I love to talk about fashion, travel, children activities, healthy lifestyles and more!