Your Child’s First Cardiology Appointment

Before I gave birth to my son, before we learned of his congenital heart defect, I never would have thought to raise awareness for CHD. I never would have known the fear, anticipation, the anxiety and worry leading up to a cardiology appointment or procedure. This fear does not change. It does not lessen or retreat into the dark recesses of your mind as your child grows. It is constant and ever flowing, cresting before appointments and during procedures and open heart surgeries.

Your Child’s First Cardiology Appointment

Before your child’s first cardiology appointment you are overwhelmed, scared, and not sure what to expect. You may have had friends reach out offering to introduce you to other CHD families they know or you may have heard worst case scenarios. So what are some ways you can prepare for your child’s first cardiology appointment? What should you take, and what can you expect?

What to Expect at Your Child’s First Cardiology Appointment 

When we go to Caden’s cardiology appointments we know what to expect.  We have, in his ten year’s worth of appointments, visited the cardiologist dozens upon dozens of times.  The procedure is always the same: first the nurse will check him in, weighing and measuring him.  The nurse will test the oxygen level in his blood and his blood pressure.  Then perform an EKG and give the print out to the cardiologist. After reading the results the cardiologist comes in, asks a few questions, listens to his heart, palpates his abdomen and asks for any symptoms related to the heart: sweating, passing out, turning blue, swollen extremities etc. Then we head to the “dark room” as Caden calls it for the echocardiogram, essentially a sonogram of the heart.

The sonographer, during the echocardiogram, will look at three points: looking up at the heart from an angle under the ribs, the front of the heart straight down and then looking down at the heart from the hollow of the neck. The calmer your child, the quicker this portion of the appointment will go.

If they are squirming it will feel like f-o-r-e-v-e-r.

So what should you take with you?

Take a pen and paper.

I can never remember exactly what the doctor says.  It is inevitable that I end up rummaging around my purse looking for an empty envelope to scribble notes on.  Instead, be prepared and take an actual pad of paper and a pen. This is particularly helpful if your child is just being diagnosed.

Take a file folder or manila envelope.

Chances are you’ll receive a small stack of paperwork.  Insurance forms, heart diagrams, future appointment reminders etc.  Stay on top of the ball and keep everything in the same manila envelope or folder. You’ll be glad you did, especially if you’re looking at more appointments in the near future.

I also requested my son’s Pertinent Information from the Medical Records Department after his first set of heart surgeries.  It is massive, but they gave it to me for free and I’m glad I have it.

Take another adult.

Whether this is your spouse or your mom or dad, sister, brother, cousin, best friend etc. – it helps to have another adult to help capture everything that the doctor says and to help you keep your child entertained while you chat with the doctor.  And not just for the first appointment, but for the first few years of appointments.

Record what the doctor says.

It would be extremely helpful to record what the doctor says (easiest on your cellphone).   This would be particularly useful if you were not able to find someone to accompany you to the appointment.

Make sure your child is well rested. 

Try to plan nap time around the doctor’s visit.  Some cardiologists like to sedate younger children and/or babies during the ECHO portion of the appointment.  Thankfully Caden never had to be sedated as a baby, and I attribute that to him being rested and calm.  Of course, this may not prevent your child from having a sedated ECHO, but it sure doesn’t hurt!

Take their favorite blanket and/or stuffed animal.

You will be there for a while.  When Caden was first diagnosed and for the first few years, appointments could take as long as three hours. Your child will benefit from their blankie, their favorite stuffed animal, any books they like to look at or read etc. The more occupied they are, the quicker the appointment will go.

I know this is a scary time for everyone involved.  If you need to chat, or you have more specific questions, do not hesitate to get in touch!

More heart resources for families:

What is a Congenital Heart Defect? Statistics You Need To Know From a CHD Mom
A Letter to My Heart Child on His Birthday
Warning Signs of Heart Failure in Children
Caden’s Feet: Walking the Path of Congenital Heart Defect {CHD Parent}
Living With CHD: Learning Barriers for Children with Congenital Heart Defects