Allen the Lionhearted

08/18/2026

Allen‘s treatment consisted of surgery and continues with medication. His coarctation was too severe for an angioplasty or a stent.

On the right side of the image, where it talks about the long-term outlook: all of these are true of Allen. So  recent MRI of his heart, known as an MRA, showed no renarrowing, and we are very thankful for that! 

When CoA is diagnosed —
there are real options.
And that matters.
Treatment depends on age and severity.
For some warriors —
surgery to remove or repair the narrowed section of the aorta.
For others —
balloon angioplasty.
A procedure where a balloon is used to gently stretch the narrowed area open.
Or stent placement —
a small device inserted to keep the aorta open and blood flowing freely.
Blood pressure medications are also commonly part of the treatment plan.
Before surgery.
After surgery.
Sometimes both.
Many children do incredibly well after treatment.
And that is worth celebrating.
But here is what every CoA family needs to understand.
Treatment is not the finish line.
The narrowing can return.
High blood pressure may continue even after repair.
The aorta needs monitoring for life.
Not occasionally.
For life.
Most children and adults with repaired CoA go on to live full active lives.
And lifelong cardiology care is what makes that possible.
Regular echos.
Regular blood pressure checks.
A cardiologist who knows their heart completely.
That is the formula.

Drop a 💙 if your warrior has been treated for CoA.

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08/17/2026

Allen has both, along with a small handful of other heart anomalies.

When one shows up —
doctors look for the other.
And there is a very specific reason for that.
Let's talk about why Coarctation of the Aorta and Bicuspid Aortic Valve are so frequently found together.
Because understanding this connection —
changes everything about how you see these diagnoses.
First —
the simple version.
Bicuspid Aortic Valve.
The aortic valve —
the door that controls blood flowing out of the heart —
normally has three flaps.
Three leaflets that open and close with every single heartbeat.
In BAV —
there are only two.
A door that was never built quite right.
Coarctation of the Aorta.
The aorta —
the main highway that carries blood from the heart out to the entire body —
has a tight spot.
A narrowing.
A section that is too small.
Forcing the heart to push harder to move blood through a space that was never meant to be that narrow.
Two different problems.
Two different structures.
And yet —
they show up together constantly.
Around 50 to 85 percent of children diagnosed with CoA also have a bicuspid aortic valve.
50 to 85 percent.
That is not a coincidence.
That is a pattern.
And here is why.
Both the aortic valve and the aorta develop at the same time.
In the same region.
During the same critical window of fetal development.
When something disrupts that development —
it rarely affects just one structure in isolation.
It affects the whole area.
The valve.
And the aorta right alongside it.
Which is exactly why when a cardiologist finds one —
they immediately look for the other.
Because the odds are significant that both are present.
And when they ARE both present —
the impact on the heart compounds.
The heart is working harder to push blood through a narrowed aorta.
AND through a valve that was not built to function at full capacity.
Blood pressure becomes elevated.
The heart works under increased stress.
The aorta —
already structurally different —
becomes more vulnerable to enlargement.
To weakening over time.
To complications that can develop years or even decades after the initial repair.
Think of it this way.
The valve door didn't form correctly.
And the main highway pipe has a tight spot.
Both structures built at the same time.
Both affected by the same disruption.
Both creating a situation where the heart has to work significantly harder —
every single beat —
for a lifetime.
This is why lifelong cardiac follow up is not optional for CoA and BAV patients.
Not after repair.
Not after a good echo.
Not after years of stability.
For life.
Because both of these conditions have long term implications that do not disappear after surgery.
They require watching.
Always watching.
This week we are going deeper.
The symptoms.
The diagnosis.
The treatment.
The long term realities.
The emotional truth behind these diagnoses.
Stay with us. 💙

Drop a 💙 if your warrior carries both CoA and BAV.
Drop a ❤️ if you are learning about this connection for the first time today.
Comment COA or BAV and we'll send you the full breakdown and resources directly.

Follow Invisible Warriors — we share the moments nobody else talks about. So no heart family ever feels invisible or alone. 💙

08/12/2026

More coarctation education. Allen’s wasn’t caught until he was closer to 9 years old. There were warning signs beginning at his birth, but they were missed by everyone.

Coarctation of the Aorta does not always announce itself loudly.
Sometimes it whispers.
Sometimes it is completely silent.
And that is exactly what makes it dangerous.
In newborns and infants symptoms can include —
Difficulty breathing.
Poor feeding.
Pale or grayish skin.
Excessive sweating.
Irritability.
Weak or absent pulse in the legs.
A baby who is working too hard just to do the basic things babies do.
In older children symptoms can include —
High blood pressure — particularly in the arms.
Low blood pressure in the legs.
Leg pain or weakness during physical activity.
Frequent headaches.
Cold feet or legs.
Nosebleeds.
Dizziness.
Chest pain.
And here is the part that is critical to understand.
Some children have NO symptoms at all.
None.
They look completely healthy.
They feel relatively fine.
And the narrowing is quietly putting strain on their heart —
Every. Single. Day.
This is why CoA is sometimes not caught until a routine checkup reveals an elevated blood pressure reading.
Or until something more serious happens.
Trust your instincts.
Know these signs.
And if something feels off —
push to be heard.

Drop a 💙 if you wish someone had told you these symptoms sooner.

Follow Invisible Warriors — we share the moments nobody else talks about. So no heart family ever feels invisible or alone. 💙

08/11/2026

Time for another educational piece. This is the reason that Allen had surgery in January 2023. His coarctation was severe. There is a possibility that if it had been caught in infancy, it may have been mild and therefore may have been treated with a balloon cath. However, we will never know the answer to that on this side of Heaven. 

We are sure of this: God sustained and preserved our son’s life before it was found, and He continues to do so. 

Eight facts about Coarctation of the Aorta that every parent needs to know.
Save this post.
Share it.
Because awareness changes outcomes.
1. It is more common than you think.
CoA accounts for 5 to 8 percent of all congenital heart defects.
This is not rare.
This is happening every single day.
2. It is a narrowing of the body's main artery.
The aorta — the highway that carries blood from the heart to the entire body —
has a tight spot.
Making the heart work significantly harder with every single beat.
3. It can range from mild to severe.
No two cases look exactly the same.
Some children have mild narrowing.
Others have severe obstruction.
Which is exactly why every case deserves individualized attention and care.
4. It is often found alongside other heart defects.
Particularly Bicuspid Aortic Valve.
When one is diagnosed —
doctors look for the other.
Always.
5. It can be diagnosed at any age.
Some babies are diagnosed before birth.
Some in infancy.
Some in childhood.
Some not until adulthood.
Because it can be completely silent for years.
6. Early diagnosis improves outcomes.
Dramatically.
Early detection prevents high blood pressure.
Heart failure.
Damage to other organs.
This is why knowing the signs matters.
This is why screening matters.
7. Treatment is highly effective.
With surgery. Stenting. Balloon angioplasty.
Most children and adults with repaired CoA go on to live full healthy active lives.
That is worth holding onto.
8. Lifelong follow up is essential.
Even after successful treatment —
regular cardiology care is not optional.
Blood pressure.
Heart function.
The aorta.
All of it needs watching.
For life.
Awareness. Early care. Better futures.
That is not just a tagline.
That is the difference between a diagnosis caught in time —
and one that wasn't.
Share this post.
For the parent who doesn't know these facts yet.
For the doctor who might see this child.
For the person who thought CoA wasn't serious enough to worry about.
It is.
And now you know.
Drop a 💙 if you learned something new today.

Follow Invisible Warriors — we share the moments nobody else talks about. So no heart family ever feels invisible or alone. 💙

07/24/2026

It was a great day collecting 30 units of blood! 🩸

07/23/2026

This video is an amazing and inspiring recap of the week Allen spent in Pennsylvania recently (look for him at least twice in the video). There are Trail Life troops in Gloucester and in Mathews! Message the page if you want to know more about the Gloucester troop’s upcoming open house event.

The next 250 years of American freedom will not be secured by ideas...

07/16/2026

One week from tomorrow! Sign up online and help us fill that schedule. ❤️

https://www.redcrossblood.org/give.html/drive-results?dt=WB:PL:DR:PM&ed=07%2F24%2F2026&order=DATE&range=10&sd=07%2F24%2F2026&zipSponsor=Allen

07/16/2026

The kid has been living the dream this week at a big campout in PA. Today was a day trip to Historic Philadelphia!

07/13/2026

The American Red Cross is declaring an emergency blood shortage as the blood supply fell nearly 25% in June. The shortage is especially serious for types O positive and B negative blood and platelets. Donors are urgently needed to give now to help ensure patients receive lifesaving medical care without delay. Don’t wait - schedule your appointment today!

Find the nearest Red Cross blood, platelet or plasma donation center. Make a difference in someone's life, give the gift of life.