Tuesday, February 7, 2012

Congenital Heart Defect Awareness Week

So much has happened since I last posted. Including both my computers dieing, which is one reason I haven't posted. :-/ However, an update will wait for another day. Today through the 14th is CHD Awareness Week, and so I will be sharing facts and possibly other blog posts about CHDs this week.

Here is the proclamation signed by Gov. Otter proclaiming Feb 7-14 CHD Awareness Week in the state of Idaho!

I was very excited to get a proclamation from the Governor for our state this year. Our local paper, The St. Maries Gazette, also did a really nice article on Jethro and CHDs.

All across the country, there are moms who are advocating for legislature to add Pulse Oximetry Screening for Newborns. I began to do this for Idaho, but after talking with my representative, decided that the way to attack this was to contact the individual hospitals and ask them to do the right thing and add Pulse Ox Screening to part of their standard newborn care. I have gotten mixed reactions from the hospitals that I have contacted, but most seem willing and anxious to get started.

You may wonder why this is important. 1 in 100 babies are born with one or more CHDs. That's about 40,000 babies a year in the US alone. Only about 25% of those babies will be diagnosed prenatally. That equals a lot of babies who go home from the hospital with parents who believe their baby is healthy. Some of those babies die in their parents arms a week later...sometimes sooner, sometimes longer...some of those babies end up at the Dr.s office in critical condition ~ crashing, we call it. For those babies, a simple, non-invasive test performed at 24 hours after birth could save their lives. Pulse Oximetry measures the oxygen saturation in the blood.

Have you ever gone to the Dr.s office or ER and they put a clip on your finger? Yeah. That's pulse ox. Didn't hurt did it? The actual screening process for a newborn is a bit more complicated than that, but not by much. Pulse Ox screening will not catch every heart defect, but it will catch those that are fatal. They are referred to as Critical Congenital Heart Defects. They affect the oxygen levels in the blood.

If you are going to have a baby, ask for a pulse ox to be performed at 24 hours. Before that, they aren't so accurate because the baby is still adjusting to life outside the womb. The screening needs to be done on the right hand, and on one of the feet. Baby should have saturation levels of 95% or better and no more than 3% variance between the hand and foot. If baby fails the first screening, it should be done again in about an hour. Our hospital also will do a third screening if the second one is failed. This is just a fail-safe against false positives. If baby does not pass, then an echo on their heart should probably be done...definitely someone more specialized, like a pediatric cardiologist should be consulted. This is especially important if you live in a more rural area where your baby will have to be transported if there is a problem. Time is of the essence for these kiddos.

Most hospitals are not yet doing this routinely. YOU WILL HAVE TO ASK. This is your baby, so don't take no for an answer. Chances are, your baby has a healthy heart. But if not, wouldn't you rather find out about it before you leave the hospital? No parent should find out about their baby's CHD from the coroner.

If you get home without a pulse ox, here are some signs and symptoms of CHDs. Not all CHDs will show these signs. Some defects are not as complex, and you can get to be an adult before you ever find out you have one. These are signs that *May* be evidence of a CHD. If your baby shows some or all of these signs, don't panic, but do make an appointment ASAP with your Dr. It's better to be safe than sorry.

From Mended Little Hearts. Signs and Symptoms
  • Blue coloring
  • Breathing difficulties
  • Fast breathing
  • Poor weight gain
  • Feeding difficulties
  • Tiring easily during feeding
Be aware of the signs, be proactive for your newborn. Blessings to you.

***I am not a medical professional. So, do your homework... ;-) ***

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