We found out about our baby’s heart defect when I was 20 weeks pregnant

My husband and I dreamed about our future child for years before actually embarking on our pregnancy journey in earnest. We are not unique, of course: That dream we had is shared by so many expectant parents and is part of what makes pregnancy so magical.

And getting pregnant for the first time is truly a magical experience. My husband and I were lucky enough to get pregnant on the second try. While I had nausea my entire pregnancy, I was otherwise gliding through it like it was the easiest thing I’d ever done.

By the time we got to my 20-week anatomy scan, the oh-so-exciting moment when you get to see all of your new baby, we already knew we were having a baby girl and were so excited to get to know her even more. I still remember what I wore that day: a black embroidered shift dress and little sandals, with a brand-new handbag I bought myself as my own push present. I dressed up for the occasion because I felt like I should.

Toward the end of my scan, the technician said she had to show the doctor my results. It threw up a red flag in the sense that we knew this was not always customary, but not knowing much myself, I was more confused than scared.

I will never for the rest of my life forget what happened next. When the doctor came in and started her own scan, she looked at me and said, “Your baby has a hole in her heart.” My reaction was immediate: tears that vowed to never stop. I couldn’t breathe.

The obstetrician sent us to see a pediatric cardiologist immediately to do a fetal echocardiogram, a test similar to an ultrasound that can determine the severity of the Congenital Heart Defect (CHD). Our unborn child had what is called a tetralogy of fallot with pulmonary atresia, in which she was missing a wall between her heart chambers and had small pulmonary arteries and one of the more complex defects. We were told that based on the severity, we should consider termination — at 20 weeks, exactly half of a full-term pregnancy.

Technically, I had four weeks to decide: in New York State, 24 weeks is the legal cut off for early termination. I had four weeks to decide the fate of that child my husband and I had spent years dreaming about.

It ultimately took me only that night to make a decision. We found a team of doctors who were, and are, true angels in the face of something otherworldly terrible. They showed us the kind of empathy and care we needed as scared new parents, while also being the best high-risk OBGYN and cardio team in the country to handle this kind of case.

On Nov. 4, 2018, I went in for my induction, and on Nov. 5th, 2018 at 8:13 p.m., our daughter was born. She was whisked off almost immediately, and I didnt get to see her again until the next morning in the Cardiac NICU.

Babies do “breathe” while in utero, but once they are born, there is a chemical released that closes a particular valve in the heart that is no longer needed. Due to her defect, she actually needed that value to stay open so she needed to get medication immediately to keep the valve from closing. That meant I held her post delivery for about 15 seconds before she was taken away; I didn’t get to really, truly hold her until three days later.

Once I got to my room, I finally had a minute to breathe — and I just started crying. I wanted my baby. I wanted to hold her, to get to know her, and I just couldn’t. The silver lining was that I had that easy pregnancy and a very easy vaginal delivery; I think God cut me a break knowing what I was in for once our daughter was born. The next morning, I was up with the sun and upstairs in the NICU to see my daughter where she would be for the next three weeks.

She had open heart surgery seven days after she was born, a second surgery at month five and a less invasive procedure at month nine. She is now 15 months old and a tornado of a toddler. She is smarter than she should be and a total comedian who knows she’s the boss, who loves to climb and dance, who is affectionate and loving. She has filled my heart with so much joy, I could burst at the seams.

Someone asked me recently what was the bravest thing I had done in my life. After some reflection, I realized it was choosing to have my baby — and getting myself prepared for whatever would come once she was born. It was knowing fully that we could only know so much about what her heart may be like when she arrived, and what the course of care would be upon that potential outcome. But I knew in my own heart that she was meant to be here, and I was wiling to endure whatever came my way.

If she was here for a day, a week or a lifetime, that was her choice, not mine, and I would be the mother she needed for as long as she was alive.