Welcome to the World Wednesday

Welcome to the World Wednesday

This is the most popular day for babies to be born…Wednesdays, I mean.  15.4% more births happen on Wednesday than on the average day.  Got me thinking – my first two children, Jack and Elle, were born on Thursdays.  Baby Eve, a Friday.  Not the first time I’ve fallen out of the statistical norm.  We are 1in100 for Pete’s sake.

So I did the math – and it means that today, 126 babies were born in the US with a heart defect.  A study from a few years back cites that routine newborn examinations STILL fail to detect more than half of babies with heart disease; examination at 6 weeks misses one third.

I personally know 17 children sleeping in intensive care units tonight.  I also know 11 families who have buried their babies in the past 5 months, including baby Cora’s parents.   She went home from the hospital with her mommy – just like half of the 126 other CHD babies born this day.  One month ago today, Cora died nursing in her mothers arms.

While this all seems very, very wrong I choose (partly for sanity, partly for peace) to view it as our window in humanity to make some things right.  Simple, safe newborn screening for the world’s most common birth defect is just a start.  Check it out.  Pass it along.

And welcome to the world, sweet Wednesday babies.

What is Newborn Screening with Pulse Oximetry?

Pulse oximetry monitoring uses a light source and sensor to measure oxygen in the blood.
A soft, wrapped sensor is wrapped around the baby’s foot.
Light passing through the foot measures the amount of oxygen in the blood.
The test is quick (3-5 minutes) and painless. Pulse oximetry monitoring should detect most heart defects.

Why is it important to check babies for heart defects?

If undetected, some congenital heart defects can cause serious or even life-threatening problems. Early detection and early treatment lead to better outcomes.

Why check the blood oxygen level with pulse oximetry?

A low oxygen saturation level may indicate the presence of a heart defect.

What are the benefits of the screening?

Babies are less likely to be sent home with unidentified heart problems – some of which can cause acute, emergency situations or even death.  If identified in the first 24-48 hours of life, medical teams are available for diagnosis and treatment of CHDs. Critical congenital heart defects, requiring immediate treatment or repair, can be performed before discharge from the hospital.

Will screening find all types of heart defects?

No current screening tool exists to detect CHDs 100 percent of the time. Pulse oximetry screening should detect most heart defects (those associated with a low blood oxygen level). However, some heart detects may not be found on screening (those not associated with a low blood oxygen level).

What will happen if a baby has a low blood oxygen level?

The pulse oximetry test will be done again. If the level is still lower than expected, then an echocardiogram (sonogram of the heart) will be done. A pediatric cardiologist will ‘read’ the echocardiogram to check for the presence of a heart defect. If a CHD is found, the pediatric cardiologist will start collaborating on those findings and working on treatment options. Most heart defects can be corrected or improved with surgery, procedures and/or medications.

What are the other signs and symptoms of heart defects parents can watch for?

• Baby tires easily during feeding (falls asleep before feeding finishes)
• Sweating around the head, especially during feeding
• Fast breathing when at rest or sleeping
• Pale or bluish skin color
• Poor weight gain
• Sleeps a lot, not playful or curious for any length of time
• Puffy face, hands and/or feet
• Often irritable, difficult to console

Congenital Heart Defects (CHDs) are defects that are present at birth and affect the structure or function of the heart or vessels.

• Heart defects are the most common birth defect.
• CHDs occur in approximately one of every 100 births.
• About 40,000 babies with CHD are born in the US each year.
• Heart defects are the leading cause of newborn and infant death.
• Although some babies will be diagnosed before birth or at birth, sometimes the diagnosis is not made until days, weeks, months or even years later.

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6 Responses to “Welcome to the World Wednesday”

  1. Awesome, awesome resource! I’ve already linked to it about five times in two days. Thank you for doing this.

  2. Just want to say THANKYOU for sharing Coras Story.
    You are a very brave & strong Mum to do what you’re doing by spreading the word of chd to other expectant parents and Mums & Dada World-wide.
    I am truly sad for you loss of Baby Cora.
    She is a pretty little Angel now in Heaven helping her Mummy & Daddy to spread HER STORY.
    Again I say Thankyou.
    Kay Uren. xox

  3. Thank you Kay. I share Cora’s Story, because it’s also Eve’s Story, and Annamarie’s Story and all heart babies, their parents, their families, and their communities. And, their stories are her story. All of these stories are needed to spread awareness. I’m lucky to be lined up with such amazing people.

  4. In this grand pattern of things you secure an A for effort and hard work. Where you actually lost everybody was on all the details. As they say, details make or break the argument.. And that could not be much more true in this article. Having said that, allow me inform you what did give good results. Your article (parts of it) is certainly very convincing and this is most likely the reason why I am making an effort to comment. I do not really make it a regular habit of doing that. Next, while I can easily see a leaps in reasoning you come up with, I am not convinced of how you seem to connect your details that produce the final result. For now I shall subscribe to your issue however hope in the future you actually link the dots much better.

  5. perfect Blog, I will come back again.

  6. I read your post, and then Cora’s story, last night. At 18 weeks pregnant, I sat and soebbd and soebbd and soebbd. So much that at my OB appointment today, my OB noticed my stuffiness and asked if I was sick.My heart absolutely breaks for you and Cora’s mama. And all the other mamas who have had to go through this. Thank you thank you thank you for bringing awareness to CHD. It has opened my eyes so much. My heart is heavy for all of the angel babies. But I love seeing your twins in red for their big brother. What hope it brings!