Tag Archives: Cora
Ups. And Downs.

Ups. And Downs.

Our heart community took some major hits this week…we lost some very, very precious babies here on earth.  But the angels in heaven gained some new playmates.  I think many of us take the greatest solace in the messages from those parents who have already experienced loss.  Levi Beers (Aiden’s dad) never fails to put the faith back in one’s soul. http://mysonisanangel.wordpress.com/   I am grateful for his counsel and friendship.

And there are so many more…Cora’s mom, Kaia’s mom, James’ mom, Allie’s mom…

Despite their still-fresh grief, they reach out to CHD families and GIVE.  I saw a post from Stephanie, Kaia’s mom, that said she would be sure to have Kaia look for Hazel and Pierce in heaven…show them around, ya know.  Just that visual image provided such comfort and peace.  I have yet to see anything more tragic than a coffin the size of a shoe box.  It’s wrong in every way.  But hearing the hope directly from these parents…that is pure light.

And in the middle of all the darkness this week – there has actually been a good deal of light.

There were two things that I started working on last summer – after Eve’s surgery.  Newborn screening for heart defects.  And pediatric heart devices for surgeons.

Those two things became the cornerstone priorities of 1in100.  There is clearly so much to do in the wide world of CHD.  But for the moment, these were the things I truly thought weren’t getting enough traction.  And that I might have some of the tools to tackle.

So this week – strangely enough, BOTH of these priorities saw major breakthroughs.

1in100 Priority 1 – Newborn Screening/Early Detection

This coming week, for the first time in memory, there will be an official report on the agenda at the national Newborn Screening Advisory Committee meeting in Washington DC.  It will be presented by the Mayo Clinic doctor that is on the Minnesota committee and that has been advising on our pulse ox pilot study here.  I will be providing comments at this meeting – and the next step is to submit the formal nomination to make universal screening for CHD at “standard of care” for all newborns.   Anticipating this will happen as soon as February.

On a related note, there are at least two CHD screening bills at the state level that have been introduced in recent weeks.  Cora’s Law and Chloe’s Law are both making headway.  Kudos to Kristine http://instructionsarenotincluded.blogspot.com/ and Kelly http://chdbabies.blogspot.com/ for their passion and drive.

1in100 Priority 2 – Pediatric Heart Devices

Six months ago I made the rounds with heart device companies to find out why it’s so damn hard to get pediatric size devices into the hands of surgeons operating on tiny hearts.  Some reasons? FDA restrictions, small market, too much R&D, too long…been keeping at it regardless, even provided testimony at an FDA workshop in the fall.  Fast forward: Email from a major heart valve company. As of this week, they are working to develop a pediatric heart valve!!  Everyone (FDA, Industry and Physicians) have now made commitments to the speedy clinical study and introduction of pediatric valves with proven safety to the market.

Stunned and grateful.  I could have never imagined so many good people would mobilize, so quickly, to move these initiatives forward in such a meaningful way.

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.