Little Hearts

Arabella, born 2011

It was my husbandís 40th birthday and we couldnít ask for a more exciting day then one that involved a trip to my OB to find out the gender of our second child. It was about halfway into the ultrasound when I sensed something was wrong. Our scan started off with us joking around and the joy of discovering that we were expecting another little girl. Soon the tech, a wonderful woman with whom I would spend countless more hours with in the coming months, seemed to switch her demeanor and started to concentrate with intensity I hadnít seen before. She kept saying that she needed one more good view of the heart and for about 30 minutes had me change positions and drink juice to get that one good view. I was quiet. I am NEVER quiet. I started fearing the worst. I had entered the room earlier that day joking that I had a foreboding feeling and couldnít relax until I heard that everything looked normal. And my feeling was right. Something was wrong. I could tell. We left that visit knowing just one thing. Something was wrong with our babyís heart. Her right atrium was large.

The tech brought the nurse in to see us and she immediately started talking about how advanced the medical community was in dealing with heart issues and that they could do open heart surgery to correct many defects. Open heart surgery, I thought, what? I couldnít believe my ears. We went straight to the Yale Maternal and Fetal Medicine Clinic and had another ultrasound. The tech started the scan showing us the feet and the babyís face and her little hands and I just lost it. I couldnít concentrate on those things. They were hands, and feet, and a face that I might never see, never hold, never be able to love. I lost it. Then came the doctor. He told us there was probably a defect but that right now he didnít know what it was. Well, that opinion didnít change until we delivered baby Arabella when we were finally diagnosed with Coarctation of the Aorta within an hour of her birth. He started reminding us that it was early. I was only 20 weeks and we could still terminate, just in case. Why would he say that? How bad was this? He told me that he has a responsibility to present that choice to any mother in this situation. I lost it again. I ran out of the room and collapsed on the floor of the bathroom. I didnít recognize the guttural sounds coming out of my mouth but I knew this was what grief felt like. Real grief.

A few weeks later we were at Childrenís Hospital of Boston having another ultrasound. It went on for what seemed like hours. They asked me questions like, how much does the baby move for you and have they mentioned anything about you having low fluid. They said they couldnít see much because they thought my fluid was a little low. It wasnít until the next day that I found out that I had NO fluid. Anhydramnios. None. The doctor told me that the baby would probably die. He said it might be for the best since we didnít know what was wrong with the baby. He told me to come back in two weeks time but to prepare myself for the worst. I went home in a daze. I was devastated.

After a few hours of crying and asking God, "why meĒ? I realized something. This wasnít about me. This was about a precious little girl. I hugged my belly and I told her that she could go to heaven if she needed to. That I would be okay. And that I loved her and didnít want her to suffer. It gave me great peace to think that she was in Godís hands and that He would ultimately decide her fate. The next day I went to the Lourdes Shrine in Litchfield and got on my knees in front of a statue of the Virgin Mary. I begged her to allow me to be blessed with this baby. Two weeks later, we had fluid. Within months I had plenty of fluid and they couldnít find anything else wrong with her heart.

Our little girl was born on September 28th, a week early due to a few non-reassuring stress tests. She was beautiful and strong. We named her Arabella, which means answered prayer. After months of being unable to pick out a name my husband and I both found the name within days of each other on a baby name website. It was fate. Arabella had her open heart surgery on October 10th. She had an abnormal repair due to her extreme Coarctation of the Aorta. The doctors used her subclavian artery as a second arch to her carotid artery. For days, we dealt with an issue of her right lung collapsing. Finally after demanding a pulmonary consult and cat scan we found out she was actually missing the top right lobe of her lung making it look collapsed on x-rays. They suspected that she might have Scimitar Syndrome.

We spent 3 weeks in the hospital and returned a week after discharge for a wound infection that no one believed was. She had to have a surgical debridement. I couldnít believe I had to endure her being pulled away from me again and brought to the OR.

Arabella recently had a cardiac catheterization for recoarctation that went very well. Thankfully, the scan showed that she didnít have scimitar syndrome, her veins returned from her lungs to her heart in the right place. And for now, she doesnít need another surgery. She is a happy baby. She loves to laugh and watch her big sister dance. She loves her belly being kissed, stroking her momís face, and resting in her daddyís arms. She truly is our miracle baby.

Story by Arabellaís mom, Melissa Ė Connecticut

8/29/2014
Ashlynn, born 2011
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8/29/2014
Noah, born 2010
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