To The Mom-To-Be Who Just Received A Devastating Diagnosis

congenital defect
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First of all, believe me when I say that you are going to be OK. I promise.

I know that you don’t believe me right now. And how could you? Your heart feels like it was just shattered into a million pieces. You are in shock. You are petrified. You just want your baby to be OK.

I was in your place eight years ago. On the morning of April 29, 2008, I woke as excited as a kid on Christmas morning. My husband and I were going to our anatomy scan. We were finally going to find out our baby’s gender! Everything was going so well. I was feeling great with no morning sickness. That was until I heard the words that would haunt me forever:

“I think I found a problem with your baby’s heart.”

I knew. I just knew that it didn’t look good. I cried and cried. I really could not believe that something like this could happen to my family. Didn’t things like this happen to other people? It just did not seem real. I sunk into a major depression quickly afterwards. Every joy and excitement just vanished.

The congenital defect itself was serious business. It was called hypoplastic left heart syndrome (HLHS). Basically, our precious baby boy would be born missing the left side of his heart.

Our baby boy. We would be having a beautiful baby boy.

The researcher in me spent countless hours on the internet. HLHS is probably among the most serious heart defects a baby can be born with. With that, I blamed myself.

I plead with you not to do the same. You did absolutely nothing wrong. As you may have discovered already, there is a lot of bargaining that goes on with such a horrific diagnosis. You also hope that the doctors have made a terrible mistake. We hoped so too. We went to one of the top pediatric hospitals in our city. They only confirmed the diagnosis.

One thing that I realized right away: I was indeed strong. And no one was going to take that away from me — ever.

In a situation like this, you are inevitably surrounded by others with opinions. They know what you should do and are not shy about telling you.

“You should terminate,” they say.

“Please don’t terminate,” others will interject.

Smile sweetly and kindly. Remind them that this is your decision. This is your baby. You know what is best. Did I mention that you are strong? Well, you are.

It is painful — very painful. The guilt is horrendous. The sadness is immense.

“What did I do to deserve this?” you may ask.

“What did my baby do to deserve this?” you will cry.

In doing our own research, my husband and I came to the decision that we were going to keep the pregnancy. It was a very personal decision. You may make the decision to terminate. Again, it is a very personal decision. Always remember, with a congenital defect or any life-threatening diagnosis, you are doing what is right for you and your baby. Do not let anyone ever take that away from you.

I do have many regrets in how I chose to close out the remainder of my pregnancy. I spent a lot of time being miserable and worrying. I let the diagnosis affect my daily life. I quit my job.

I almost felt as if I didn’t have the right to enjoy my pregnancy after that. I was wrong. At the time, I was lucky enough to meet a few wonderful women in similar situations. Some were pretty down on themselves, much like me. Another one told me to cut out the shit. She said it is not the time to continue punishing myself. It is a time to take care of myself.

I remember walking into my baby shower with mixed feelings. We were having a baby. For that, I was excited. He would be born very ill. For that, I was heartbroken.

I am not going to lie. When I went home to put away the presents, I cried a bit. I wondered if Liam would live to fit into many of the clothes. It is normal to have those thoughts. It is OK. We are, after all, human.

The thing about this sort of pregnancy is, whatever the outcome, it will stay with you. However, through it all, I found strength and happiness. I also found out that women can get through anything. I did.

Lean on those who love and support you.

Do your research.

Remember you are not alone.

Stay positive. (This one may be a bit hard. I know it was for me.)

I have since had two babies after Liam. I worry about them constantly. However, I also know that comes with the territory.

Although I cannot change what happened, I am grateful.

I am grateful that I am I mom. I am grateful that I am strong and have others beside me. So do you.

I happen to be one of them.

I will walk by your side.

You will get through this.

I promise.