Regan's Story--Congenital Heart Defect

February 7-14 was Congenital Heart Defect Week. The word "congenital" means existing at birth. The terms "congenital heart defect" and "congenital heart disease" are often used to mean the same thing, but "defect" is more accurate.

The heart ailment is a defect or abnormality, not a disease. A defect results when the heart or blood vessels near the heart don't develop normally before birth.  (American Heart Association)

Anyone can have a child with a congenital heart defect. Out of 1,000 births, nine babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping. (American Heart Association)

My friend Jill is a fellow Go Red Ambassador at the Kansas City Chapter of the American Heart Association. Brad and Jill took their daughter Regan to the doctor when she was a week old for a routine checkup.  The nurse heard a pretty significant heart murmur and from there the next step was to set up appointment with a cardiologist.  Children’s Mercy Hospital and certainly a cardiology office was the last place her parents wanted to be with their first born baby.
 

The cardiologist did an echo cardiogram on Regan and found Transposition of the Great Arteries.  Regan’s pulmonary artery and aorta were switched.  You can imagine her parents surprise, let alone the doctors surprise.  Doctors do not find Transposition in their office.  Babies with Transposition are usually found in-utero or at birth, when the baby turns blue.  To Regan’s advantage, she also had “holes” in her heart allowing blood to flow to the right places, so needless to say, she didn’t turn blue at birth and Transposition wasn’t apparent.

(Read More about Regan's Condition here.)

The doctor told Brad and Jill that Regan’s heart was the size of a walnut and her pulmonary artery and her aorta were the size of pencil leads, but "not to worry, Dr Lofland performs this surgery routinely."  This does not make any parent feel better! The doctor explained that they would splice the veins, switch them and stitch them back together.    With the advancements in technology, the doctors were able to fix Regan's heart.  Regan is now a healthy 12 year old - who takes dance lessons, is an artist and has no restrictions in PE class. 

Brad and Jill  realized this situation was out of their control, but also realized they need to make a life long conscious effort be heart healthy.  They work together as a family to minimize future risks of heart problems:  they choose to eat healthy, exercise and get routine checkups.

Remember, heart disease doesn’t discriminate, it effects all ages of women, young and old!