Athena's Story: Parent's Letter Project Hypoplastic heart defect- Athena's mom

We found out about our little girl's heart defect when I was 18 weeks pregnant, the same day we found out that we were having our first daughter. It was so scary, we didn't know how to react. It was very frightening and yet we wanted to be happy about having our first little girl. I can't put in words the millions of different emotions that ran through me. Every little thing seemed abnormal with my pregnancy.

When it came down to having her we choose to have her at Washington Hospital Center so that I could be close to her when she was at Children's National. I ended up getting a C-section due to her heart rate dropping every time I would have a contraction. I got to see her for a quick second before they rushed her away to the specialist waiting for her at Children's National. It was hard to make the decision to leave her behind when I finally got released so that we could go home and see our son and so that I could heal. The week I was away felt like years. She had gotten really sick with necrotizing enterocolitis (NEC) (a complication to her stomach due to the restriction of blood flow to it) and had to be taken to surgery for her PA Band at 2 weeks old. She was in the hospital for six weeks before she was able to come home.

She came home on November 5th and was re-hospitalized the day after Thanksgiving due to breathing fast and turning blue. She stayed in the hospital for about a week and was released again only to have to return in the beginning of January for bronchiolitis. She spent a few days this time and was released only to have to go back about a week later with respiratory syncytial virus (RSV). She was swollen three times her normal size and had a lot of extra fluid around her heart. This stay ended up being about two weeks long. About a month after the RSV she came down with pneumonia. It seemed like a never ending cycle of her catching everything. She finally was able to get her Glenn operation at a little over six months. Two days later we found out that she had a virus and her lung was partially collapsed. The same thing happened after her PA band was placed.

It is so hard to see your little one always so sick but the good days are what keep you going. Trust me I know that it seems like they will never come, but they do. There are a lot of struggles that come with having a special needs child but the love from them is so amazing. Seeing all that they can come through is just a miracle on its own. So to all the parents out there with a baby with hypoplastic left heart, good days will come. Hold onto those days and they will help you get through the bad. These babies overcome what seems impossible and have so much love to offer. The best advice I can give is to keep the faith in the man upstairs. The power of prayer is a wonderful thing. Good Luck with your special and beautiful baby whether it is a girl or boy. They will surprise you with all that they can overcome.  

Sincerely,

Hollie, a proud mom of a beautiful baby girl with hypoplastic left heart

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