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Old 02-02-2014, 10:04 AM   #1
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February is Pediatric Heart Awareness Month!

My son Noah was born last January with a CCHD (complex congenital heart defect) and had his first open heart surgery June 3rd at 4.5 months old. We are hoping he won't need any more surgery for a while. He sees a cardiologist every 6 months right now. If you are interested in following his story there is a link in my siggy

In honor of heart month I am trying to spread a little awareness. I had no idea about heart disease in children until I had an ultrasound with Noah at 22 weeks. My daughter was born at home and I didn't have a single ultrasound with her and she never had a pulse ox test after birth. We planned the same thing for Noah but just happened to end up having that anatomy ultrasound and I am beyond grateful for it. I cannot imagine how differently things may have gone if we had gone ahead with our plans for his birth. Please really consider that ultrasound mamas, I know there are a number of us who home birth and skip it.



After your baby is born it is important to ask for a pulse ox test. Many states now have these mandated to be done in the hospital but you should still ask to be sure it is done. If you have a home birth most pediatricians and family doctors have a pulse ox monitor in their office and will be happy to check your baby a day or so after birth. I have even begun hearing of some home birth midwives starting to carry pulse ox monitors too!



Unfortunately as with any screening the pulse ox screening can miss some defects and it is important to know the signs of heart problems in an infant. Here is a great graphic that use a mnemonic device with "Heart" to show what to watch for



Thank you so much for taking the time to read my post here! I really appreciate it and hope that it can be useful to others and feel free to copy anything here and post it else where (I am posting a lot on my personal facebook and on Noah's page this month too), the more people who help spread awareness for this silent killer of our sweet babies the better!

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<3 Did you know 1 in 100 babies are born with a heart defect? 1 of them is mine <3
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Old 02-05-2014, 12:38 PM   #2
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Re: February is Pediatric Heart Awareness Month!

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And my heart warrior DS N born 1/11/13!
<3 Did you know 1 in 100 babies are born with a heart defect? 1 of them is mine <3
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Old 02-05-2014, 12:44 PM   #3
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Re: February is Pediatric Heart Awareness Month!

I am happy your lo is doing well I dont have a lo with a defect (I have fetal echos every pregnancy though) but I was born with two defects and had my first surgery at 8 months and my last one I was 25 and the next I should be around 40 (hoping I can making it that long!). I have a wonderful, happy and healthy life and am VERY active. I pray the same for your son!
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Old 02-06-2014, 06:10 PM   #4
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Re: February is Pediatric Heart Awareness Month!

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Originally Posted by CntryMama View Post
I am happy your lo is doing well I dont have a lo with a defect (I have fetal echos every pregnancy though) but I was born with two defects and had my first surgery at 8 months and my last one I was 25 and the next I should be around 40 (hoping I can making it that long!). I have a wonderful, happy and healthy life and am VERY active. I pray the same for your son!
Thank you! I am so glad you are doing well!! It gives me lots of hope to hear from adults who are thriving with heart defects! I hope my son will do just as well as you as he grows!
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<3 Did you know 1 in 100 babies are born with a heart defect? 1 of them is mine <3
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Old 02-07-2014, 06:29 AM   #5
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Old 02-07-2014, 06:48 AM   #6
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Thanks for sharing. My newest nephew just had open heart surgery yesterday morning at 2 days old.
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Old 02-10-2014, 12:18 PM   #7
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Re: February is Pediatric Heart Awareness Month!

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Thanks for sharing. My newest nephew just had open heart surgery yesterday morning at 2 days old.
I hope your nephew is doing well!
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And my heart warrior DS N born 1/11/13!
<3 Did you know 1 in 100 babies are born with a heart defect? 1 of them is mine <3
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Old 02-08-2015, 04:04 AM   #8
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Re: February is Pediatric Heart Awareness Month!

Bump for CHD Awareness week that started yesterday!
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And my heart warrior DS N born 1/11/13!
<3 Did you know 1 in 100 babies are born with a heart defect? 1 of them is mine <3
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Old 03-01-2015, 03:53 PM   #9
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Re: February is Pediatric Heart Awareness Month!

My baby was born with a heart defect as well. They never caught it on ultrasound though. He almost didn't make it. He'll need a valve replacement someday but he's ok for now. I hope you're little one continues to do well! Thanks for spreading awareness!
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Old 03-01-2015, 06:21 PM   #10
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Re: February is Pediatric Heart Awareness Month!

My dd had OHS this past fall to repair a very large ASD. Her heart is doing great. She's getting physical therapy, speech therapy, and feeding therapy to get her caught up. My dd's defect probably wouldn't have been caught by a pulse ox test, but I am so grateful it's now a requirement. It helps catch many CHDs not caught during the 20-wk scan!
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