Matters of the Heart

Ellie was 6 days old when she had her first heart surgery. Her heart defects were discovered by Dr. Bolin through ultrasounds before she was born.

February is celebrated as American Heart Month in an effort to raise awareness about heart health and the prevention of heart disease. Kids with special needs are often at an increased risk of heart conditions.

Down (Trisomy 21), DiGeorge (22q11.2 deletion), Turner (Monosomy X), Patau (Trisomy 13), Edwards (Trisomy 18), Alagille and other syndromes carry high rates of congenital heart disease (CHD).

Special Family talked with Dr. Elijah Bolin, a pediatric cardiologist and associate professor at UAMS and Arkansas Children’s Hospital, to learn what parents need to know about healthy hearts.

What kind of conditions do you see in kids with special needs? The heart problems we see are as diverse as the accompanying syndromes. Some children have simple holes which can be repaired with a single intervention or surgery, and some have complex “single ventricle” lesions, in which there is only one effective pumping chamber in the heart — usually there are two.

When are most of these conditions diagnosed? In Arkansas, and nationwide, about 50% of CHD is diagnosed prenatally; the other half is usually diagnosed in the first year of life.

What do parents need to look out for? During pregnancy, the following are some indications for referral to a pediatric cardiologist:

• maternal diabetes.

• family history of CHD in a first degree relative of the fetus.

• medications a mother is taking that have been associated with CHD in offspring (some anti-seizure medications, some anti-depressants, lithium and others).

• maternal lupus.

• suspicion for CHD on screening ultrasound.

There have been significant efforts in the last decade to screen for cyanotic heart disease, which is associated with low oxygen levels, after a baby is born. All newborns across the U.S. are now screened with pulse oximetry, a way of noninvasively measuring oxygen level in the blood prior to discharge.

What can parents do for their kid’s heart health? The American Heart Association recommends at least one hour of moderate exercise every day for kids. We should all consume sparing amounts of red meats, processed foods, refined sugars and alcohol.

Increasingly, leafy greens and other whole vegetables and fruits appear to be associated with a long, healthy life. The amount of necessary sleep varies by age, but should be regular. Good sleep hygiene — no screens in the room, lights out, no radios — is just as important.


Heather Honaker is circus ringleader for three kids 4 and under — two typical, one not, but they all think they are special. You can follow along as the messiness unfolds around her family by reading the Typically Not Typical blog.

Originally published in February’s Little Rock Family magazine.

Follow TypicallyNotTypical.com by entering your email address here:

One Comment Add yours

  1. My sister was born with a hole in her heart. It closed itself. She was lucky that way. It’s sad that so many kids with Down syndrome and other disabilities are born with health problems. While my sister’s heart never needed surgery, her eyes did, and it was traumatic for her to undergo so many medical procedures at such a young age. I hope that research can keep advancing so that disabled kids can end up with fewer problems and less frightening solutions.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s