Thursday, February 5, 2015

Awareness

Let's talk about awareness for a moment. Friday, February 6th is National Wear Red Day in the USA. It is a day designated for people to wear red and spread awareness about children with congenital heart defects. February is considered Heart Awareness Month.

Many people don't understand the importance of awareness, and have expressed as much to me. I'd like to tell you a little story that happened about a year ago.

Right at the beginning of starting up Little Lev, I went to print some posters to disperse to the hospitals. I was in the center of town, in Jerusalem at an office supply store. My friend works there and we were chatting, while she finished printing up the posters. Another friend walked into the store and all three of us were talking. Tehilla was sitting calmly in her stroller.

As my friend rang up the posters, I noticed the customer behind me in line, staring intently at our Little Lev poster. I smiled at her and she said, "What is that? What is that for?"

So, I explained to her that Little Lev is an organization that I was starting to help families of children with congenital heart defects.

She responded with, "What for! Why do you need an organization for that? It's really not a big deal."

I'm pretty sure that my mouth hung open for quite a few moments, before I responded, "Um...It is a big deal. Families need support and a place to go to for education and help. That's what this organization is for."

She said, "Yeah, but these heart defects- they just go away on their own. What do you need support for that?"

I calmly said, "Um, no. Most heart defects do not go away on their own. They need intervention-"

She cut me off and said, "Yeah, yeah. My neighbor's grandkid had a heart defect. It was a hole in his heart and then it closed up on it's own. You're making a bid deal about nothing."

I quickly whirled my stroller around, for her to look at Tehilla and pulled down her shirt, exposing Tehilla's scar. "My daughter was born with half a heart. (At that point) She has had two surgeries and needs two more surgeries. We hope and pray and do everything, but we do not know what is in store for her in the future. This will not go away on it's own."

She was completely stunned.

I said, "You are talking about a very uncomplicated VSD. There are more than 34 heart defects and many of them, even VSDs need surgery. Not all of these children survive."

The woman looked deeply at me and said, "Whoa. I- I- I never knew. I had no idea. Good for you. Bless your daughter. May she live a long life. Wow."

Awareness is not about attention. It is not about sympathy. Awareness is about creating a better future. 1 in every 100 babies born has a congenital heart defect. Believe me when I tell you, that you never expect to be that small statistic. But we are.

Out of all babies with a congenital heart defect, only a third of parents find out during pregnancy. Another third find out at birth. And the last third of babies born with a congenital heart defect find out when it is too late.

That's just unacceptable. Awareness is about me, telling you, that if you have a family member or yourself are pregnant (Congrats!) then here are 5 important questions that you should ask at your 20 week ultrasound:

1) Is the heart rate normal?

2) Do you look at the arteries as part of your scan?

3) Are the heart and stomach in the right position?

4) Do you see 4 chambers of the heart?

5) Is the heart function normal?

Awareness is me informing you, that it is your right and your duty to ask questions and educate yourself.

Awareness is me telling you how essential it is to request a pulse oximetry text before taking your sweet little bundle of joy home. It does not hurt, is non-invasive and costs nothing. It is simply that clamp that they put on a finger with the red light. It just checks the oxygen level in your baby's blood and can actually be the difference between life and death. Thanks to many heart mamas in the USA, it is becoming a law that all hospitals must check before sending a baby home. One day, I hope that us heart mamas here in Israel can push for the same thing.

Awareness and support lead to research and advancement in medicine. It can one day lead to all heart defects being found during pregnancy. It can actually save lives.

So, pretty please, be a part of our Team Tehilla and support and raise awareness for congenital heart defects. Post on Facebook, Twitter, Instagram or send us pictures: tehillasheart@gmail.com. Just join us in spreading awareness!






2 comments:

  1. thank you for posting these questions for the 20-week ultrasound. someone i know had a baby with TGM and they only figured it out (they didn't like his color) shortly before his anticipated discharge from the hospital, i.e., 2 days after birth (BH it was corrected and he's fine)!!! i was incredulous that they hadn't picked it up, seeing as my 20-week scan results always mentioned the number of chambers of the heart and the positions of the great arteries. with my son (now 19 months) they kept calling me back for follow-up ultrasounds and fetal EKG, first for an echogenic focus, then for a possible VSD (that was not seen on his EKG at 3 months old). the hospital nursery had the info in his file hours before he was born. i really couldn't believe that TGM wouldn't be picked up at 20 weeks. and yes, we're in israel (my friend is at a different kupa than i am, so i can't vouch. my ultrasounds were always super detailed). i will say that it was definitely difficult to get a pulse oximetry reading on a baby so small.
    good luck to you on the rest of your journey with your daughter- sounds like BH things are good.

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    1. oh yeah- prof. rein did my fetal echo (in the regular kupa). i remember asking what the point of genetic testing was, and his agreeing that there really wasn't one. plus he asked if i was delivering in hadassah (i wasn't) because if i didn't he'd be the one checking the baby out. i really really liked him.

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