Living with Hypoplastic Left Heart Syndrome, Nick

Nick's Story

Nick at a swimming pool and Nick older

Nick was born with a congenital heart defect (CHD) that required multiple surgeries and eventually a heart transplant. His mother shares her perspective on what it felt like to leave the hospital without her newborn son, the challenges he has faced growing up, and the need for more research to better understand the causes of CHDs. Read more below.

As Susan welcomed the birth of her son Nick, she thought everything seemed normal. However, as she asked, “Is my baby fine?” the initial smiles surrounding her quickly changed to whispers and concerned looks. Soon, Nick was whisked away to specialists in a large children’s hospital while Susan was left behind. Shortly afterward, she was released, leaving with a balloon that read “It’s a boy!” but she held no baby boy in her arms. Susan did not realize then that the adventure had only begun as tests soon revealed that her baby had a congenital heart defect.

After Nick had three difficult open heart surgeries, his doctors decided that he could survive only with a heart transplant. Just before his second birthday, Nick received his new heart. Although Nick is an adult now and doing well, he and his parents still worry about transplant rejection and the future. “I think about the pain and frustration we have been through, and my hope for other families is that we can find out what causes congenital heart defects so that we can prevent them,” added Susan.