Addison's Story: Parent's Letter Project Hypoplastic left heart- Addison’s parents

I will never forget the day we went for our 20-week ultrasound. We were just hoping to find out if we were having a boy or a girl. After telling us they could not get a good view of the heart, we were referred to a fetal cardiologist, who we went to the very next day. He informed us that part of our unborn daughter's heart had not formed. She would need a series of three surgeries, the first one at birth, the next at six months, and the third at two years. 

We began looking for a surgeon at Children's National and Richard Jonas, MD, kept coming up. We made our appointment with him, and knew after the first visit that he was our doctor. Our daughter Addison was born November 17, 2008, and was transported to Children's National. They decided, due to a few different factors, that they would wait to do surgery until six months. So, on June 3rd, our Addie went in for her Glen Procedure. She did great, and the entire staff was wonderful, compassionate and caring. She had her Fontan Procedure this past August (two years old) and did great as well. 

We can't ever thank the Children's National doctors and nurses enough for the care that Addie received while she was a patient there. If you are reading this because your child has been diagnosed with hypoplastic left heart syndrome (HLHS), just know that you are in good hands at Children's. It is such a scary and stressful time, but we were able to be with Addie the whole time. Addie is now two-and-a-half years old, and is thriving! She runs and plays like any other child her age. It has been a trying and stressful two years, but the end result is worth every bit of it!  

Sincerely,

Addison's parents

Treatment Team

Invest in future cures for some of life's most devastating diseases

See other ways to give

Keep in touch with Children's National by signing up for our newsletters.

Sign up now