My Story

I still get those chunks in the back of my throat when I think about the day my husband and I were told that our child was "probably not compatible with life". I was 19 weeks pregnant with our third baby--a girl--who seemed to have a plethora of heart defects, as well as other physical abnormalities. Two different doctors explained that her quality of life (if she lived long at all) would most likely be poor, and we would be forced to travel over an hour and a half to appointments often. A large collection of prescription meds could be vital to her survival. She would have to undergo surgeries to mend her heart--and possibly other organs. That is, if they could be repaired at all. 

I cried. My husband held my hand, but I couldn't be consoled. 

Then the doctor said as he continued with the ultrasound, "You may want to consider another option. These conditions can be debilitating and fatal." 

He didn't even look me in the eye. I knew exactly what he meant by "another option", and I shook my head. 

"Don't make your decision now. Think about it. "

What? 

At no point did the thought of abortion cross my mind. How could he rationalize that it was any kind of solution? No--we would never terminate our child. She deserved a chance at life. Who am I to deprive her of that? 

Over the next months we traveled to appointments almost 2 hours away from our home. We sought different opinions, and we did the best we could to scrape together gas money to do so. Sometimes we were able to find a babysitter to would watch our other two small children, and sometimes we had to take them. Our credit card debt worsened, and our nerves got the best of us. To make matters worse, neither my family nor my husband's family live close by. There were many nights I cried myself to sleep, wishing I could take my daughter's place because the thought of her suffering was excruciating. If I thought too much about it, I became angry at the world. My mood swings were almost unbearable, and slapping on a fake smile for our other two kids became increasingly difficult. It pained me to think that my oldest children would be affected by my despair if I showed it, so I kept it together as best as I could muster. I remember  pretending I had stubbed my toe one time, when my oldest (3 years old at the time) found me crying in my room. 

I wanted to ask why this was happening to our little girl, but I refrained--knowing there were no answers for it. Congenital heard defects (CHDs) occur in 1 out of every 110 babies, and in the vast majority of cases the cause is unknown. One of Baby's specific defects occurs in 1 in every 12,000 babies. 

As Baby grew inside me, we began going to appointments with a pediatric cardiologist who specialized in visual imaging. We were terrified, yet hopeful, to get her opinion on our daughter's previous diagnosis's. After a two and a half hour ultrasound, she gave us something to hold on to. She revealed that she was 99% sure that our daughter's heart was the only organ affected by her condition. This was good news, because doctors could now rule out many other complications. However, the cardiologist was quick to point out that Baby would probably need multiple surgeries to live, and possibly have to have one within days after birth. 

The months flew by, and I felt her strong kicks. She was so feisty. Stunning doctors, Baby grew at around the same rate as normal babies, and that gave us more hope that she would be able to take on the obstacles in her future. 

I didn't meet Baby until the day after she was born. She was born via emergency cesarean, and whisked away to the Neonatal Intensive Care Unit to be fully examined and monitored. But when I did meet her, and I held her little hand, I knew she was a fighter. Her grip was so strong, and the doctors had already taken her off of breathing aides. Her main cardiologist was ecstatic because miraculously, her oxygen saturations (the amount of oxygen in her blood)--though not in the normal range--were higher than expected. We were given the okay to take her home a week after she was born, without having to operate! 

Over the next few months, we kept in close contact with Baby's cardiologist. The game plan was to schedule her first surgery at the age of 2 months old, but when her oxygen saturations and other factors seemed to be going our way, we were able to push the surgery until she was almost 6 months old. 

I cannot put into words how frightening and emotional the day of Baby's open heart surgery was. I can only say that my husband and I somehow got through the entire 10 hours. When the surgeon came to tell us that he had repaired 95% of her little heart (which was about the size of a medium to large strawberry), you can imagine the relief that washed over us. He told us that he was confident that she would not need another surgery any time in the near future. It was unbelievably good news. We had come such a long way from "probably not compatible with life". This was a true miracle.

Baby is a year old now. Her last cardiology appointment was nothing but positive. She walks, she talks, she laughs, and she plays. She has no disabilities--physical or mental. She is amazing and loved. How glad we are that she is here.

We didn't see that doctor again who had suggested abortion, though I have contemplated emailing him a photograph of Baby. I wonder what he would say. Mostly, I wonder how many other women he has convinced to have abortions, by persuading them that they are doing the right thing by ending their child's supposed suffering. Insinuating that the cons of giving their babies a chance somehow outweigh the pros... I wish I could meet them, and tell them that doctors can't know everything. Our daughter is living proof. I wish I could tell those women that they are strong enough. There are many support groups for parents and children with congenital heart defects, as well as support groups for other birth defects. There are even effective support groups for women who have unplanned pregnancies and feel lost or overwhelmed. No matter your situation, don't think for one second that there is no one out there who knows or cares how you feel. 

Women, you are not alone. 

I'd be there in a heartbeat to listen ;) I hope to reach out to more women with my story, and I want to read others'. Feel free to share yours in the comments, or email me at TarheelKrystle@gmail.com. Whatever your situation and whether you feel like sharing, venting, or just asking questions--I'm all ears.