What I want you to know about having a baby born with a Congenital Heart Defect

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Beth Red.

I knew something was amiss when my family doctor entered the delivery room and asked if I would like for him to get the Chaplain. Sure, I had just had a rough delivery 30 minutes prior, but my husband and first born had left earlier to go to the nursery for a bath. As I tried to process his request, my husband entered with tears streaming down his face followed by a parade of doctors. That very moment is the exact moment that everything in my life, everything about who I was or who I thought I was completely changed with no chance of going back.

What I learned next was that my daughter was born with a Congenital Heart Defect, specifically TAPVR, and was about to be transported to another hospital for open heart surgery. It was all so surreal. I was going to say goodbye to my brand new baby, and my husband who would accompany her. I had to stay behind to recover. I had no family in the state and I was in shock. A rock of a girlfriend and my sister-in-law were the two saints who kept me together the next two days. My beautiful child had open heart surgery at just 21 hours old. It was beyond comprehension, as this was an undetectable defect in which we were not remotely prepared.

The surgeon begged me to recover in the hospital because my baby was going to need me. When I was released, I was warned that the sight of her might be overwhelming. There are no words to describe how affected I was and shaken to the core when I approached her isolette. She had a large cut down the middle of her chest with three large drainage tubes protruding from her abdomen, and what seemed like a million other wires and lines.

Things progressed as well as they could, and on Christmas Day, we were released to go home. We were exhausted and overwhelmed. We didn't get much sleep between pumping to feed her and then the actual feeding process, but I was committed to making sure the only thing she had was breast milk. Within a week of being home, she ripped out her feeding tube. She was a large baby at birth and was gaining steadily, so the cardiologist said we didn't need to use the feeding tube anymore.

I took her to get cutesy pictures taken at 4 weeks old, but I couldn't bring myself to compose a birth announcement. Things were going great, but I just didn't want to jinx it. Odd, given the fact that I'm not the superstitious type.

At 6 weeks old, we went for a post-op check-up. It was at that time we were dealt a second blow. She had Coarctation of the Aorta, and would require a second surgery. At 10 weeks, she went under the knife again. It felt like a roller coaster. We thought we were progressing, only to face another setback.

I started to remove myself from CHD support groups because I couldn't take all of the sad stories. It was too real and too close. I was obsessed that the other shoe would drop at any moment. My girl developed and progressed into a normal little girl and I remained superstitious. I never did create a birth announcement for her, as I guess I was afraid that putting something in ink would seal our fate. When you are going through trauma, rationale goes right out the window.

When our beautiful girl was about 3 1/2, I gave birth to a healthy baby boy. We had high level monitoring throughout the pregnancy, so I knew he would be fine. I hired a professional photographer to come to our home when he was a few days old. I hired a graphic artist to create a custom birth announcement that encapsulated our family vibe and proudly mailed them to everyone we knew. I had this feeling of guilt in my heart, though. My sweet girl was certainly announced to the world, but it was amid fear and confusion.

A couple of years ago, she stumbled across her brother's birth announcement and asked why she didn't have one. She has read my account of her birth story and knows what we went through, so I feebly attempted to explain that I was too fearful to announce her birth in that way. She shrugged it off, but I still didn't feel right.

Not long after that conversation, I came across the story of the Latrell Birth Announcement in which a mom of an adopted teenage boy created a special announcement for him. I was inspired and realized it was not too late. Amy Mathews, a professional photographer volunteered to take the pictures at no charge and the same graphic artist (Laura Minks) who did my son's announcement offered to also do a complimentary announcement.

My daughter is celebrating her 10th Birthday, and I could think of no better way to celebrate than to announce her to the world. Here is my beautiful Vivien who has been the single most transformational person in my life, and I am certain she will be a great influence on many others in her lifetime.





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