Warning Signs of Heart Failure in Children

Let me be VERY CLEAR in the beginning of this post.

If you think your child is having a medical emergency – call your pediatrician or cardiologist. If you are particularly worried, take them to the hospital or emergency room to get checked out.

I am not a doctor, I am a mom. A mom with lots of heart experience.

My oldest (9 yo) son Caden has Truncus Arteriosus type II.  A rare and severe congenital heart defect that has required him to undergo three open heart surgeries, a heart catheterization and eight days on ECMO among other procedures.

All of these combined with the heart defect itself has affected his ability to learn and to succeed academically.

Read: Reasons The Ronald McDonald House Is More Than Just a Room

We spent three solid months at the children’s hospital in Kansas City in 2007 as he was operated on, treated and operated on again.  After the initial set of surgeries, we were sent home to be monitored until he required his third open heart surgery in August of 2015. We’ve been through some stuff, friend.

Read: Ways to Help Prepare a Child for Their Sibling’s Surgery

My point: I’ve got experience with all things heart related when it comes to kids.  If you are reading this post, you are worried that your own child may either be a heart kid themselves, or that your previously diagnosed child may be having heart related issues or may be ready for another surgery.

Is that blue on his lips or just that lollipop? Is she sweating too much, or is that normal?  Is he getting too tired compared to his brother?  How do you gauge all of these things?!

It is terrifying, I know. ((hugs))

If I could reach my arms out through cyber-space, I would wrap them around you and tell you that you are not alone.  Your fears are valid.  Your worry is real.  Only about 1% of the population knows how you feel.  But you know what? I’m also part of that 1%.  I get it.

1 out of 100 babies are born with a heart defect.  I never in a million years thought that I would be part of that statistic, but here I am.  Here WE are.

Read: Pulse-Oximetry at Birth + Why Isn’t This Standard Testing in ALL States?

Again, I am NOT a doctor, but being that I have a kiddo of my own (and one that wasn’t diagnosed until two months of age), I get these questions from friends quite often.

Warning Signs of Heart Failure in Children 

In newborns:

Trouble eating/not eating enough
Trouble breathing while eating
Bluish lips, fingernail beds or toes
Failure to gain weight (Caden was 10 lbs at birth and got down to 7.5 within a few weeks!)
Profuse sweating
Retractions when breathing (dipping in the hollow of the throat and up under the ribs)
Rapid/forceful heartbeat (you can SEE the heart beating, even when they are sleeping or resting)
*there may be others, but these are the main symptoms my doctors told me to look for

If you suspect any of these symptoms, call your pediatrician and take your child in. They can check the oxygen levels in their blood, which is a good indication of how well their heart is functioning without being an invasive (or expensive) test. They may also take an x-ray of the chest to see if the heart is enlarged.

If it is found that your child may have a heart abnormality, you will be referred to a pediatric cardiologist for further testing.  This may include an EKG and/or an echo-cardiogram.

In some newborns, the signs of heart related issues can look like pneumonia, colic or other respiratory infections.  In fact, the day Caden got diagnosed, his original diagnosis was Bronchiolitis.  If only.

In older (known) heart kids

If you have an older heart child (one that has had surgery or another procedure) you’ll want to look for similar signs, but slightly different.  The older our heart kids get, the better it is for us as parents.  We can talk to them, we know them and their personalities better, and they are able to pinpoint certain ailments or “icky” feelings.

What are the signs and/or symptoms to look for when your child is having heart related issues?  Again, I am NOT a doctor….

Is your child…

Turning colors?
Sweating profusely (drenching the bed sheets)?
Sleeping a lot (falling asleep during dinner etc)?
Irritable or moody?
Have they mentioned being tired at school?
Has their teacher (or gym teacher) made any remarks?
*If you’re suspecting a decline in physical activity or concentration/attention, it’s a good idea to check in with their teacher to see if they have noticed it at school as well.

Note that these changes may come on very gradually.  Having always known that Caden would need more surgeries as he grew, I was (and always will be) on the watch for strange or irregular behavior.  Looking back over the year or so before his last surgery (August of 2015), I noticed not a whole lot of change.  It was all very gradual.

Caden will probably need more surgeries as he grows and as he ages.  I’m hoping that the conduit they placed in his heart this time will last him for years and years and years.  They were able to put in a larger conduit, large enough for a grown man! Now the goal will be to keep it from calcifying/narrowing and needing to be replaced.

I knew that the surgery was coming and it was still a shock.  Still unexpected. Still felt surreal.

The bottom line: You know your kid best.  If you notice a difference in attitude or behavior, try keeping a journal. Keep track of his/her eating habits, sleeping habits, moods etc.

If you are concerned and notice a trend, it never hurts to either put in a call to (or get them looked at by) their cardiologist.

Ready for more heart?

Caden’s Feet: Walking the Path of Congenital Heart Defect {CHD Parent}
Living With CHD: Learning Barriers for Children with Congenital Heart Defects
Things I Wish I Would Have Known About Having a Critically Ill Child
Reasons The Ronald McDonald House Is More Than Just a Room
Finding Free Heart Screenings for Your Little Athlete + Why You Need One (Anthony Bates Foundation)
Curve Balls + Open Heart Surgery + Life Updates