My Son Was Born With A Terrifying Heart Defect––Here's Our Story

by Dana Lee
Scary Mommy and Dana Lee

When I was 33 weeks pregnant with my son, I went to my usual weekly ultrasound appointment. The ultrasound technician, who I thought didn’t know what she was doing said to me, “Well, I am having a tough time. I am going to grab the doctor.”

What the heck is she doing? The doctor came back and continued to take more pictures as my annoyance started to grow. I was hungry and had errands to run. This appointment was taking a lot longer than usual. So the doctor continued do more with the ultrasound wand and try to get better pictures as I was lying on the table.

The doctor mentioned they were able to take some good pictures of my son’s heart and recommended that we make an appointment with a pediatric cardiologist that morning. She said, “The appointment is at 11. Go to the cafeteria and get some food while you wait.”

She encouraged us to take this appointment just to be sure everything is okay and “What is the harm in having a second look?”

What? Does this person know what she is doing? She is a doctor!

My husband and I had lunch at the hospital cafeteria and I was complaining. My husband is an engineer and said, “It is always better to get a second opinion. Let’s see what the doctor has to say.”

Courtesy of Dana Lee

Of course he would be encouraging. We went to the pediatric cardiologist and the first thing I noticed was his bowtie. He was an older gentleman, with gray hair. The nurse laid me on the table and brought in a machine to take more pictures of my belly. The doctor said, “I am not sure why you are here.” I explained what had happened downstairs with the other doctor and the ultrasound technician.

As time went on, he finally said, “I don’t see it.”

“What don’t you see?, I asked.

“I am not sure if the pulmonary artery is not there or if I just can’t find it.”

What kind of doctor are you? I thought but didn’t say. How could he have said this to me? It was only in hindsight that the previous ultrasound technician and doctor knew exactly what they were doing but didn’t want to alarm me.

The doctor made it clear by saying, “There is a problem with your baby. Your baby does not have the pulmonary artery.”

I replied, “You just said you didn’t know what you were looking at. How can you be so sure?”

He looked at me with kind eyes and said, “He does not have it. He will need to have open heart surgery as soon as he is born. We will have everyone from neonatalogy on board and be ready when your baby arrives. He will be transported to Children’s Hospital after his birth and need to have surgery right away, otherwise he will die.”

Courtesy of Dana Lee

I was crying with this shocking news. The thought just hit me like a ton of bricks, There is a problem with my son and he wasn’t even born yet.

In the next few weeks, we met with so many doctors and specialists and tried to prepare for my son’s birth but you will never prepare for something like this.

When my son finally arrived, I held him for two minutes. My husband held him for two minutes and he was transported to Children’s Hospital via ambulance getting ready for surgery. I couldn’t go with him. I was so upset.

My son was born in 2012. Fast forward to 2019. Since my son’s birth, my son has had two open heart surgeries, 10 heart catherizations, 5 stents, a valve replacement and a piece of gortex used as the pulmonary artery.

For myself, I have seen therapists, suffered from PTSD, under constant stress and fear of losing my son, was diagnosed with secondary depression, constantly wondering how to handle the next appointment or even the next surgery, and the list goes on. This was before COVID! But I have hope!

Everyday I have to remind myself to get rid of the chatter in my head and focus on hope and gratitude.

I am grateful that my son turned 9. I am grateful that medical technology is advancing. I am grateful for those who have helped our son at Children’s Hospital.

I don’t take his life for granted. And I continue to have hope that he and I will live a long life together!