November 30 is Newborn Heart Defect Screening Awareness Day

-
November 30 is Newborn Heart Defect Screening Awareness Day. I think it is very important to spread this awareness, especially since congenital heart defects (CHD) are the number one birth defect in babies. CHD affects 8 out of every 1,000 newborns and is responsible for more deaths in the first year of life than any other birth defect. 

A simple screening, which is done via pulse oximetry done within the first 24 hours of the baby's life, could prevent such deaths from happening. One such death was a five-day old baby named Cora. 

I was born with a congenital heart defect (CHD), and nobody knew until I was about five or six months old. My mom began noticing that the simplest act of eating from my bottle completely wore me out. And when my lips and fingernails began to have a bluish tinge to them, she knew something was very wrong. 

Unfortunately, at that time we lived on an Indian reservation in Wolf Point, Montana so there weren't a lot of specialists in the area. The closest one was in Great Falls and that doctor told my parents there was nothing that could be done. Thankfully, my parents took me to a pediatric cardiologist in Bismarck who confirmed I had a heart defect and that I needed surgery.

Things are so much different than they were in the 1970s. At the time, there was hardly any available information regarding congenital heart defects and the technology was not there to detect such defects. Times have changed and since these screenings are now available, I strongly suggest that if you have a newborn or are going to have a baby get him or her screened for a heart defect.

Comments

Post a Comment

Most Popular Posts

Some Thoughts on World Prematurity Day

-
Image
November 17 marks World Prematurity Day . One might wonder why awareness needs to be raised about premature births. Well, I can tell you firsthand that it is a really good thing when more people are aware of the risks and complications, not to mention the emotional toll, of having a baby born too early. Having a baby born prematurely is not something most expectant parents think about until it happens to them. Most moms-to-be who first learn they are pregnant automatically think they have seven or eight months to prepare for one of the biggest days of their life. Expectant parents usually have one response when asked if they are hoping for a boy or a girl - "As long as the baby's healthy." But sadly, sometimes that's not always the case - especially if the baby is born too early. I will never forget the book I was reading shortly after finding out I was pregnant with Faith - "What to Expect When You're Expecting." It was a great resource that o
Read more

My Little Vacay to Nebraska

-
Image
When one thinks vacation, they probably don't think about Nebraska, especially in November! But when I heard that a friend of mine was going be having surgery in Omaha, I began thinking about how great it would be to go down that way, especially since my sister, Tesa has lived in Lincoln for 17 years, and I have never had the chance to visit.  Lo and behold, my dad had also been talking about heading South to Texas in November to hunt wild pigs. My two respite care workers were available to look after Faith starting on a Friday morning through Tuesday evening. All I had to do was book a flight so I could get back home.  Despite all the details falling into place, I was still anxious about it. I haven't flown since Faith was a baby, so I was especially nervous about that part. I prayed about it and believed that everything would be okay.  On the morning of my departure, Faith woke up just in time and her respite care staff was able to get her dressed and take her to her day prog
Read more

Faith Turns 21!

-
Image
 Faith's 21st birthday was on Friday the 25th and it ended up being an all-day celebration! She didn't sleep well the night before, so I was a little concerned she would run out of steam, but she just kept going! It ended up being a beautiful fall day, so I didn't even need to put a jacket on her, which is rare for the end of October.  Faith in her new birthday shirt!  This year, she was able to bring cupcakes to HIT. Last year, due to the dietary restrictions of her peers, she didn't bring any treats. This year, however, she is a new room, where they truly love their snacks! After I dropped her off, I raced around like a maniac getting her ballons, presents, and everything else ready for the surprise party we would be having at the end of the day.  Faith with some of her staff making a cupcake delivery.  When I picked her up from her day program, I informed her that some friends of mine that I worked with wanted to give her a special birthday treat. So, we made our way
Read more

Goodbye to Our Special Tomato Adaptive Car Seat

-
Image
Today we said goodbye to our Special Tomato adaptive car seat. And special it was. It helped Faith stay safe and secure in our Hyundai driving her back and forth to therapy appointments, shopping excursions, and many other activities. It also helped us through our time of not being able to afford an accessible van. Like all adaptive equipment , the special car seat was expensive and although it is the law that a child is secured in a car seat while traveling in a vehicle, neither health insurance nor Medicaid would pay for it.  Thankfully, we were able to receive funds from the fundraiser, the Great American Bike Race ( GABR ) which helps families pay for services and equipment that insurance doesn't cover for kids with cerebral palsy and related disabilities.  After doing research on the Internet and talking to Faith's physical and occupational therapists, we decided to go for the Special Tomato adaptive car seat. You would think something with that name would be
Read more