Creating Awareness

Help CHD get some much needed publicity by visiting The Doctors site and voting for an episode to air featuring CHD stories, symptoms, etc...

http://www.thedoctorstv.com/produce/idea_comment/380You

The site is a bit cumbersome, you must register and then confirm the email they send you in order to both vote and make a comment. CHD needs more airtime...way too little is known about it. It's up to us to be the voice for CHD. Check out Drew's "Heart Journey" and share it with others. I wrote this for a project IMH is doing and it was printed in this month's newsletter...

I want to tell you about a very special little boy. His given name is Andrew, but we call him Drew. We waited a long time to meet him and when he arrived on May 30, 2008, we were over the moon and 100% in love with him. He is our little miracle.

We were sent home from the hospital with a seemingly healthy newborn. Nursing had gone so well in the hospital that the nurse decided I did not need a lactation consultant. Nursing went well until Day 2 at home. Suddenly, Drew stopped waking to eat, we had to strip him down and place a cold washcloth on him to keep him awake to feed and even then, he fell off and fell asleep. He was losing weight and I was encouraged to keep up on the feedings (every 1.5 to 2 hrs), to be vigilant about him eating properly and to supplement if necessary. When he flat out refused to nurse, we had no choice but the bottle. Weeks and weeks of struggling to get him to eat, of 30 minute feeding sessions, ensued. It was very stressful. Slowly but surely, he started to gain weight. We thought the worst was behind us.

At Drew's one month appointment, our Pediatrician noticed a murmur she had not heard before. She advised us to contact a Pediatric Cardiologist and told us not to worry, that she just wanted it to be checked out. All I knew about murmurs was that a lot of babies had holes in the heart and they usually closed on their own, that they were no big deal. How wrong I was. I suspected something more urgent than our Pediatrician was owning up to was actually going on when she personally called the Cardiologist and got us an appointment for the following week.

My beautiful six week old son underwent an ECHO, an EKG and a physical exam by the Pediatric Cardiologist and then the rug was ripped out from under us...he had Pulmonary Stenosis and Atrial Septal Defect. His right ventricle was pumping harder that it should be to ensure blood was flowing to his lungs. He had a hole in the upper two chambers of his heart that was not closing as it should. He needed to be monitored. Stunned, we walked out of her office and headed into our new "normal." We had a baby who could not be allowed to cry hard or for very long, we had to make sure he didn't turn blue, that his breathing wasn't too fast, etc, etc...

One month later, we were back for more testing...the Pulmonary Stenosis had gotten worse. She brought his case before Cardiologists and Cardiovascular Surgeons at the local Children's Hospitals. They advised her to wait 4 more months to see how his heart would grow. Four months later, it had gotten even worse. His right ventricle was now pumping at least 3x harder to get the blood to his lungs and the hole was definitely not closing on its own. We were advised to schedule a balloon valvuloplasty at the Children's Hospital of Michigan...and soon.

On February 9, 2009, at 8 months of age, Drew underwent his balloon valvuloplasty. This is a catherization procedure, similar to an angioplasty. It was unsuccessful. Not only was Drew's Pulmonary Valve stenotic, but the area just above his valve, in his Main Pulmonary Artery, was constricted. Going into the valve, it measured 12 mm and coming out, it measured 6 mm. He needed Open Heart Surgery. We were, once again, shell shocked. How could this be happening?!

Drew underwent Open Heart Surgery at Children's on March 27, 2009. During the five hour operation, his heart was stopped, his body put on bypass, he was given blood and blood products and his body temperature was lowered to help preserve his organs. The operation allowed the surgeon to suture his Atrial Septal Defect and repair the Pulmonary Stenosis. Drew's Main Pulmonary Artery is 30% patch and 70% his own tissue. He was on a ventilator for over 24 hours and de-saturated once, requiring a manual suctioning of his lungs to pull out a mucous plug. He turned blue and purple and screamed, but no sound came out. It was the most gut wrenching position to be in...to see your child hurting and not be able to do a thing about it. Over the next 6 days, he recovered well and was sent home on minimal cardiac drugs. We know how blessed we are. Lots of children and families fare far worse.

Since his surgery, Drew has had two Cardiology follow ups. His Stenosis has returned, and at the repair site. So, now we begin another waiting game. Waiting to see if it worsens, waiting to see how his heart grows, waiting to see how the patch material does, waiting to see if more repair is needed, or worse, if he needs a new valve. We are also doing genetic testing to see if he has Noonan Syndrome, which might explain his CHDs. These tests are NOT cheap and this will cost us a significant amount of money, but we need to know, as there are serious implications if he does have Noonan Syndrome. His CHD and surgery have caused gross motor delays as well, which we are working on helping him overcome.

Far too little is known about CHD. When I think back on what I thought I knew before Drew's diagnosis, I am embarrassed. CHDs kill more children annually than all pediatric cancers combined, yet funding is 5 times less than for pediatric cancer. 40,000 children will be diagnosed with CHD this year. Approximately 2 million adults are walking around undiagnosed. The numbers are staggering...and yet, no one knows about it, unless they are directly affected by it. Please help us change this! Support the vital research that is needed to help solve the CHD puzzle. Give Drew, and other CHD warriors like him, the hope for a world where CHD does not kill any more children.

Learn about CHD by visiting the following sites:

www.pted.org
www.tchin.org
www.itsmyheart.org

Read all the heart stories, happy and sad. Spread the word...create hope.

Find out if your state/city has a local chapter of It's My Heart and ask how you can help. If they don't, consider starting a chapter. I promise, it will be well worth the hard work. I have been so blessed to be a part of this organization. Do what you can, even if it's just telling one other person about CHD. That's one more person who knows about it and can advocate for it in his/her own way.

Until we find our Jenny McCarthy (and hopefully he/she is less abrasive, but still as strong) and build our St. Jude Children's Reasearch Hospital (an institution I love and fully support), it is up to us to be the foot soliders for CHD. Please help us!