Living with A CHD child

Congential Heart Defect also known as CHD is the most common type of heart defect that affects the way the blood flows throughout the body.

I become a mother in the month of October 2018. I never imagined my child would have health problems, nor would need multiple surgeries. To this day I ask the same question, “why my son?”

There still isn’t any answers as to why my son was born with a hole in his heart. We’ve done a DNA test when he was firstborn, which came out negative. There’s still a genetic testing that needs to be done which will take place in Palo Alto California.

In my last post I’ve explained what CHD is, how there’s different types of congenital heart defects in the world. The defect my son has is Tectrology of fallot. If you were to meet my son in person you would never notice anything wrong with him. He looks and acts like a completely normal child. Although, he does live with an invisible disease that is life threatening.

Tectrology of Fallot

Tetralogy of Fallot defects cause oxygen-poor blood to flow out of the heart and into the rest of the body. Risk factors include a viral illness such as rubella during pregnancy, maternal alcoholism, or a family history of the condition.

While I was pregnant with my son. My cardiologist informed me that I was pumping blood throughout my sons body. By the time I gave birth, my son came out with a blue tinged skin. After the nurses cleaned him up, his skin color came back to normal. Unfortunately, I didn’t get to hold him except giving him a kiss and seeing the nurses take him up to the NICU. From there they had him on oxygen and getting him all settled.

Doctor visits

I can’t express how many doctors my son has on his team. Honestly, visiting each of them can be the most nerve wracking I ever encounter. The fear of a new doctor telling me my son needs surgery scares me the most.

Early Intervention

Not everyone knows or even heard of Early Intervention. I didn’t know anything about it until the year of 2014. Early Intervention is a service that provides developmental delay or disabilities. The program can help babies and toddlers ages zero to three years of age catch up on their development. Early Intervention focuses in these five areas:

• Psychical (reaching, crawling, climbing, walking, running and so on)
• Cognitive (thinking, problem solving, and learning)
• Communication (listening, talking, and understanding)
• Adaptive( dressing, eating, self help)
• Social and emotional (interacting with others, and playing)

If you are a parent or foster parent concerned about your child’s development, you would be referred by your pediatrician or you can sign up yourself to have your child evaluated. The program is completely free so there’s no charge to you. You will be assigned to a coordinator who will help you through the process as well as connecting you to other resources in your area that you maybe interested or may need.

Children who qualify may receive different services:

• Home visitation
• Speech and language
• Psychical therapy
• Social services
• Nutrition
• And so much more!

Each state is different and may offer the same or different services.

Caring for a CHD child is very stressful. In the beginning there’s tons of doctors appointments, and surgeries. After awhile things do tend to slow a bit down. You may see doctors within a few months or so. Surgeries may be in a year or two depending on the Circumstances. If you have ever met a CHD child you should know they have so much energy, I know my two year does. I still don’t know where he gets it from. They are the strong little miracles that never give up.