‘She’s beautiful, but something’s wrong with her heart.’ HOW? I was only 23! I clapped my hands over my face and WEPT.’: Mom births baby with Truncus Arteriosu, says motherhood is all about ‘rolling with the punches’

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“All my life I romanticized the idea of becoming a mother. Even as a very small child, when people asked me what I wanted to be when I grew up, I would quickly respond with, ‘A mommy!’ I played with my dolls as if they were real babies and day-dreamed about my future children. As I grew older, I looked forward to mothering with an intense yearning. The idea of being a mother was a flame, I felt it burning deep within me. This is what I wanted to do; more than that, I felt called, that this was what I was made for.

That is why the memory of the day all those dreams and desires became a reality is still so vivid in my mind. My husband Joseph had his arms wrapped around me as we stood in our outdated pink bathroom, waiting. We had the pregnancy test face down on the counter so that we couldn’t watch the results. Those three minutes felt like an eternity! The timer Joseph had set on his phone went off. My hands shook as I turned the test over. Two faint pink lines.

‘Oh my gosh, I’m pregnant!’ My heart was racing and tears sprang into my eyes. ‘Are you sure two lines means pregnant?’ he asked. ‘Yes! Read the box!’ I handed it to him, my hands still shaking. I could see the realization finally wash over him. He pulled me back in to a tight embrace and we cried. Tears of overwhelming joy.

Our friends and family were ecstatic for us. The first half of pregnancy was generally quite easy. I found a wonderful midwife and birth center. Holding my sweet child was just around the corner and everything would be just as I had imagined. It all seemed to be falling into place.

Courtesy of Brianna Rodriguez

I remember feeling a twinge of anxiety in the days leading up to our anatomy scan. Joseph was unsure if he would be able to get the day off – but I knew I needed him there with me. I had an uneasy feeling about being there alone, one that I still cannot quite explain. He ended up getting the day off, much to my relief, and my anxiety gave way to excitement long before we were called back for the scan.

The sonographer was friendly and detailed. She showed us our baby’s profile first, and I remember thinking it was the most beautiful thing I had ever seen! When she moved on to different parts of the body, she listed them and explained a bit about each one. She finally got to the heart, ‘… and here’s the four chambered heart…’ but her words trailed off. She was silent for what seemed like an eternity, and then she said only a few more comments for the rest of the scan. I can’t even remember what they were. She took several photos of our baby’s different organs and body parts, but she kept returning to the heart. I thought it strange she kept going back to the heart, but what did I know? It could have been a normal practice. So, I didn’t say anything. The sonographer placed a few photos of our baby’s profile and one that noted our baby’s sex in an envelope for us to open on our own, and then she left the room – telling us that the Doctor would be in shortly to speak with us.

When we were alone, both Joseph and I felt a tension, like something was not right, but neither of us said anything to the other. Perhaps we were afraid that saying it out loud would make it true. The silence was broken by the doctor entering the room. She had a calming effect and kindness about her. She spoke softly, ‘First of all, I want to tell you that your child is beautiful and I know that they are going to do amazing things in their life. But…there is something wrong with their heart.’ She went on to tell us that this particular heart defect was critical, and would require open heart surgery after birth.

Courtesy of Brianna Rodriguez

It took me a few seconds to fully process what she had said. Then the words hit me like a gut punch, knocking the wind out of me. The things I had yearned for my entire life seemed like they were being ripped right out from under me. My dreams were crumbling. I glanced over at Joseph and saw the tears in his eyes, then I broke. I clapped my hands over my face and wept uncontrollably. The doctor waited for us to calm down, then she went over some details regarding appointments and tests we had to take – it’s all sort of a blur looking back. Just like that, Joseph and I were alone again. We wept together for several minutes, holding each other tightly. We prayed, and then went out to complete the tasks given by our doctor.

We left the hospital hours later, still not knowing whether or not our little baby was a boy or a girl. Joseph drove me down to the waterfront, to the same place he proposed to me a little over a year and a half prior. We walked out onto the pier and sat down on a bench. We had both been crying off and on for the past several hours, but we felt calm now. Joseph opened the envelope, ‘It’s a girl!’ his voice cracked. She already had a name, our Shirley Anne. Emotions rushed over us again. Our sweet baby girl was going to need open heart surgery! She was going to struggle and that was so hard for us to bear.

As my pregnancy progressed, we received a definitive diagnosis for Shirley’s heart defect, Truncus Arteriosus. It was even more rare and complex than we thought. Instead of one open heart surgery, it required anywhere from 3-5 heart surgeries throughout her lifespan. Due changes in her condition, my plans for where I would deliver her changed three times throughout the second half of pregnancy. I felt like I was small boat lost at sea, tossed and turned every which way. This is not what I had dreamed of, this was so hard, was I really made for this?

The weeks following Shirley’s diagnosis were some of the hardest I’ve ever experienced. I wept for her every day. How did this happen? I was only twenty-three, and I was healthy! I felt guilty, like I had failed and betrayed my own child. Why didn’t my body do its job and allow her to grow properly? Every night when I tried to fall asleep, the tears would pour to the point that I couldn’t breathe. Being alone was the hardest, my mind ran wild. There were several times I had to pull over on my way to work because I just couldn’t see the road through my tears. The pain of my own failure stemmed from the same deep place that my yearning for children had come – but that burning flame felt all but snuffed out. It was a palpable ache.

In the months and weeks leading up to Shirley’s birth, Joseph and I spent a lot of time praying for peace regarding whatever might lie ahead. We spent hours talking about how Shirley was a gift, no matter how long she was with us. Even if the time we had with her was only during pregnancy, we would still be grateful. We were still her parents and she was still our child! I made an effort to enjoy every last bit of my pregnancy, at least I knew she was safe and healthy in my womb! We were surrounded by support from our friends and family, and slowly, I found more stability. My idea of motherhood was not a pile of dust and rubble, it was being rebuilt – but it was different. The flame was flickering.

Courtesy of Brianna Rodriguez

Shirley’s due date finally arrived. I woke up at 5 a.m. with uncomfortable contractions. I had a couple false labors over the last week, so I tried not to think much of it. I was also somewhat in denial – because I never expected to actually go into labor on my due date! But these contractions would not be alleviated. After three hours of painful contractions we decided to call the hospital and head out. Our suitcases were already packed for the long hospital stay. We were ready to go. As I walked into the hospital that day, I remember thinking, ‘This is the last time I’ll walk through these doors as a pregnant woman.’

I will always remember the moment Shirley was born. It is seared into my memory. She came out purple, the cord was wrapped around her body and her tiny little ankle. ‘My baby! My baby!’ I cried over and over. Her face was crumpled as if she was about to cry, but she didn’t. She didn’t cry!

Courtesy of Brianna Rodriguez
Courtesy of Brianna Rodriguez

They quickly cut the cord and whisked her away to clear her airway and check her vitals. Less than a minute passed when I finally heard her cry. Relief washed over me. They brought her back and let her lay on my chest for a few minutes. This was it. This beautiful baby was mine. She was my child and I was her mother. So much fear melted away in that moment.

Courtesy of Brianna Rodriguez

We spent four days in baby bliss, taking turns cuddling her for hours. Surgery was scheduled for the fifth day. That morning I just cried and clung to her. Joseph didn’t even ask to hold her because he wanted me to have that time. He just held her hand, kissed her forehead, and took several photos.

Courtesy of Brianna Rodriguez

We didn’t want to forget that day. Then, at 8:03 a.m., we signed the consent forms for Shirley’s heart surgery, and they wheeled her away shortly after. They let us follow as far as the surgery doors and then we gave her our final kisses. Watching her disappear from view was one of the most painful and surreal experiences of my life. We wept together as we made our way back to the family sitting room and we spent the rest of the day praying and trying to keep each other occupied through conversation. Finally, we got word that her surgery was complete, and it went well.

Courtesy of Brianna Rodriguez

Seeing her for the first time post-surgery was difficult. Her chest was still open, with a dressing over it, and she had so many tubes and wires that it was hard to see exactly where the tubes ended and she began. Her room, which used to be spacious, was filled to capacity with support machines and different drips and medications. The whole scene was overwhelming.

Courtesy of Brianna Rodriguez
Courtesy of Brianna Rodriguez

Shirley’s recovery was slow, for no apparent reason at all, since her surgery was successful and she didn’t run into any major issues. Her body was just weak and needed time to heal. I watched many other babies move out of the cardiac ICU and be sent home. Some days I thought we’d never make it out of the hospital. I found it difficult to slow down and to allow Shirley to move at her own pace, not the one I had mapped out in my mind. It is a learned skill, to be able to let go of one’s imagined sense of control. One I had the privilege of learning and practicing several times over in that very hospital room.

Courtesy of Brianna Rodriguez
Courtesy of Brianna Rodriguez

Shirley spent four weeks in the cardiac ICU and one week on the surgical recovery floor before we were discharged. She was not eating by mouth, but through a nasogastric tube. We had to learn how to administer her medications and place the feeding tube ourselves, before we were allowed to bring her home. Our first weeks and months at home were a blur of tube feedings, tube replacements, spit ups, diaper changes, and medications. I grappled with strong feelings of inadequacy, and the idea that something had been stolen from me. The normal newborn stage that most mothers get to enjoy, I didn’t, and I grieved the loss of it for a while.

Courtesy of Brianna Rodriguez

But then, the light returned. Shirley began to improve little by little. We got to wean her from several medications. She was getting stronger, she learned to hold her head up, and we cheered! She pushed up on her arms and I shed happy tears. I began to realize that these simple little things were such an incredible joy to me not in spite of everything we had been through, but because of it. The darkness I had walked through with her made this light even brighter!

Courtesy of Brianna Rodriguez
Courtesy of Brianna Rodriguez

I have been continually reminded of this idea throughout the last two and a half years with Shirley. I feel privileged to be the one watching and encouraging her as she overcomes the obstacles in her life. I rejoice with every new skill. When she learned to nurse at 8 months, to eat without her tube at 10 months, to scoot at 16 months, to crawl at nearly two years, and walk at two-and-a-half. I didn’t feel anxiety over the fact that she was so late to develop, instead I delighted in watching her triumph. The wait made the celebration that much greater! Shirley was diagnosed with a rare genetic abnormality at nearly two years old, but this diagnosis didn’t strike me like the first one, it gave me hope. It was just part of her story and knowing about it helped me to support her better. This journey has brought more deeply rooted joy than I ever thought possible. None of my childhood daydreams came even close.

Courtesy of Brianna Rodriguez

I have learned to see motherhood for what it really is. No mother’s journey is exactly what she expects. It never goes entirely as planned. Motherhood is being flexible, rolling with the punches, it’s being present, having the courage to lean on others, and giving up on being the one in control. It’s loving deeply and allowing yourself to be laid bare and broken. It’s as much about growing the mother as it is about raising the child.

Courtesy of Brianna Rodriguez
Courtesy of Brianna Rodriguez

The flame in my chest is burning brightly again because I know that this is where I’m supposed to be. This is what I was made for. I was not made for this because it is easy for me, but precisely because it is not. I am growing and stretching. Sometimes the growing is painful, other times it is wonderful, but most often it’s both.

Courtesy of Brianna Rodriguez

Now, I sit here, feeling my second child kick inside my womb and watching my darling daughter rock her dolls, and I smile to myself. I don’t know if children are in her future, but if they are, I will be here to support and encourage her as she learns the very same lessons I learned, and ones I have yet to learn. Lessons that cannot be taught, they must be lived.”

Courtesy of Brianna Rodriguez

This story was submitted to Love What Matters by Brianna Link. You can follow her journey on Instagram and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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