CHD Awareness Week--A Mother

CHD Awareness Week--A Mother's Reflections

By Sue Carroll Duffy, Psy.D.

I always miss Seamus, but as CHD Awareness Week approaches I am more conscious of missing him. Five years ago, my husband and I anxiously anticipated his birth, a birth that we knew would be complicated by his immediate need for open heart surgery. Seamus had Hypoplastic Left Heart Syndrome--a severe congenital heart defect with unknown cause.

Seamus was 7 weeks old and never left the hospital. At this time of year I remember the hope we held with each breath after he was born and we monitored the flashing lights, beeps and tubes surrounding his small body. When he endured multiple surgeries, infection and kidney failure—we held each other, but our arms ached from handing our boy to the doctors so many times. We wanted him in our arms at home in his freshly painted moonlight yellow room. We wanted to hold him without worrying about disturbing the tubes that were giving him life. We wanted to watch him grow.

We have had two other children to cherish and hold and distract us from the pain of loss, but when I see a yellow bus, I remember that this would be the year that he would have gone to Kindergarten. I struggle now to explain to his siblings that they have a brother that they can not play with.

Our loss has also made me aware of the many other children and families affected by congenital heart defects. There are about 40,000 infants (1 out of every 125) that are born with heart defects each year. Today most heart defects can be corrected. In the last 25 years, advances in treatment of heart defects have enabled half a million U.S. Children with significant heart defects to survive into adulthood.

I am grateful for CHD Awareness Week and the tremendous support we have received from our family and community during Seamus’ life and since his passing. This week reminds me of Seamus’ great gift to us—gratitude for each breath that we share together and gratitude for the tremendous efforts to help children and families struggling with congenital heart defects.