#microdeletion

This is my nephew Jeremiah. He and I recently spent an afternoon together. It's amazing what spending time with a child you love can do for your emotional state. As I was spending time with him it struck me (as it sometimes does) just how very grateful I am that Jeremiah is alive. That he is here in this world to bring me the joy and happiness he does.

So, as we close in on Jeremiah's 4th birthday, I feel the need to help raise awareness on a very serious topic.

My nephew was born in July of 2009 with a condition called Chromosomal Microdeletion. Basically it means that tiny pieces of his chromosomes just aren't there. We didn't know that that was what he had at the time (he was diagnosed near age 1). Everything he has are all considered difficult all by themselves, but every condition he has are symptoms of, and caused by the microdeletion.

Jeremiah is far sighted and has worn glasses most of his life. He has ptosis in his left eye as has two surgeries for it. He has a bone development condition in his lower legs and ankles and wears corrective braces (which hopefully, he won't need all his life). He has had two surgeries to put tubes in his ears to help with his hearing difficulties. His vocal chords have a hard time forming words, so we are all learning sign language and he has speech alongside his physical therapy. He has a form of minor albinism and takes medications for seizures.

This post is not about any of those. This post is about the condition he was born with that very nearly cost him his life, and could still cause problems in the future.

This post is about Congenital Heart Defects.

A Congenital Heart Defect (CHD) means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels. There are many types of congenital heart defects, ranging from those that pose relatively small threat to the health of the child to those that require immediate surgery.

When he was born, Jeremiah was diagnosed with an Atrioventricular Septal Defect (ASD) and a Ventricular Septal Defect (VSD). This put him in critical care, because they weren't sure if he would survive. After a month the Doctors sent him home, hoping that he would grow over the course of six months, becoming bigger and stronger and give the inevitable open heart surgery a greater chance of success.

After some time passed it was determined that he was not growing. His body was working so hard to keep his heart going that he was not getting the nutrition he needed. A gastric feeding tube was put in. Due to complications Jeremiah spent the next several months in and out of the NICU and had three surgeries involving the feeding tube.

During this time my sister and her husband were not only trying very had to deal with everything going on with Jeremiah, but to also raise and reassure their three older children. My father spent weeks spending nights at the hospital so that my sister could go home and spend time with her other kids and sleep. I spent many long nights when Jeremiah was home babysitting not only the older ones, but watching over him so that my sister and brother-in-law could spend some much needed time away from everything. It was a time filled with lots of prayers, tears and held breaths.

In January of 2010 it was determined that they couldn't wait for him to grow anymore and Jeremiah went in for open heart surgery. It was successful and they managed to repair both the ASD and the VSD... However, there is still a murmur and there is the great possibility that he will need another heart surgery in the future.

Open heart surgery is not a cure.

It is a risk in and of itself and many children die on the table. What we need is a cure.

This post is to raise awareness to CHD. I'm not asking for your money, if nothing else, please pass this on.

As of today, CHD research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

To learn more, to donate, or volunteer please visit:

The Children's Heart Foundation

The Congenital Heart Walk

Also, visit one of my favorite charities. Project Linus is a group whose mission is to:

Provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer “blanketeers.”

Provide a rewarding and fun service opportunity for interested individuals and groups in local communities, for the benefit of children.

I can honestly say that receiving that blanket was not only a comfort for Jeremiah, but also for my sister and brother-in-law. To be able to wrap your critically ill child  in something warm, colorful and full of love in a cold and sterile hospital may seem small, but it can mean the world to both parent and child.

If you have a child with CHD, YOU ARE NOT ALONE! CHD is one of those diseases that not only affects the child but every single person around them. You do not have to bear it alone.

Mended Little Hearts is a non-profit organization designed solely to help and support the children and families of those affected by CHD. They provide visits in the hospital, on the phone and provide support meeting and plan activities for heart children in safe environments outside the hospital and the home. They are a nationwide organization and have chapters in most cities.