Thursday, January 31, 2008

Heart Defect Awareness

I've been working on trying to bring awareness about heart defects the best way I know how. That is by sitting here on my computer and not only blogging about it, but sending emails, posting on message boards, navigating myspace, and reading about other heart kids. This month has been challenging. We've had a couple little ones earn their wings. The only thing keeping my heart from breaking into a million bits is that I never got to know these kids personally. The more friends I make in the CHD community, the more of a chance I have to one day soon, be touched by the death of a little one that I know. Not a name on a support group posting, but a person that I have spoken with his or her mom. Know their birthday, where they live, sent them a Christmas card.

I am trying so hard to make a way for my voice to be heard on what I am passionate about. Babies need screening for heart defects in the same way they are screened for other defects. What I don't understand is the WHY. It's so easy to screen for! Fetal ultrasounds specifically to look at the anatomy of the heart. Then at birth, before the baby is released, a tiny probe is attached to the toe and the amount of oxygen in the blood is checked. If it's low, do an echocardiogram.

The equipment is RIGHT THERE! Tell your doctor to use it. If they refuse, ask for a new doctor. I would NOT want any doctor treating me or my newborn that would dismiss something so serious that would only take 10 minutes of their time. In the United States and in the UK, 1 in every 100 children will be born with a congenital heart defect. Many of them will be sent home to die because nobody bothered to check. It needs to be a Federal Mandate that all newborns have a heart screening before being released from the hospital. It can save YOUR child's life.

I got very lucky with Tommy. In my 5th month, AFTER I'd had my 20 week ultrasound,(where nothing was found wrong with him)I had Subchorionic Hemorrhaging. At the time, we did not know what was causing me to bleed profusely for no reason. I had an ultrasound every week for about a month. Finally, on what was about my 4th ultrasound, the doctor pulled me aside and told me the tech could not see Tommy's heart or his umbilical cord. I was being sent to our local University hospital for a level 2 ultrasound. It was with that ultrasound a week later that Tommy's heart defect was found and I was sent for a fetal echocardiogram for a diagnosis.

What if there had been no bleeding? What if he had been a healthy pregnancy? He was born "balanced" with blood oxygen levels in the high 80's, low 90's. He was pink. Even though he was a preemie, he was healthy. We would have been sent home if he would have been born on time and no one had caught his heart defect. He coded 4 weeks later in the hospital and had emergency heart surgery on the spot. At the time, my husband was still at work when the hospital called me. He would have died if he had been at home with me. Then he would have just been a statistic.

If anyone reading this is expecting or knows someone expecting, please, ask for a fetal ultrasound specifically to see the heart, and at birth, at around 36 hours old, request a check with a pulse/oximeter to measure your baby's oxygen levels. YOUR baby could be that 1 in 100. Congenital Heart Defects are the NUMBER ONE birth defect! In the first year of life, it will KILL more babies than all forms of childhood cancer combined. 51% will not see their first birthday.

Please pass this blog on to any and all who may benefit from the information. I want to save as many baby's lives as possible.

1 comment:

Awesome Mom said...

We did not know ahead of time with Evan. Luckily he started showing symptoms only hours after his birth.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries