After weeks of hospital rooms, fevers, and treatments no toddler should ever know, Bowen is finally going home.
2020 began with so much hope and excitement for my family. When we found out we were expecting our first child, we were thrilled. We decided to keep the gender a surprise, and soon, our little one was lovingly referred to as āSprinkle,ā a tiny little life growing inside me. I remember those early daysāfeeling the first little flutter, knowing there was a baby within me, full of potential. But the joy was clouded by the fear and anxiety that every expectant parent feels, especially when you’re facing a year of uncertainty like 2020.
The first half of the year was spent with anticipation. But as the COVID-19 pandemic took hold, everything began to feel uncertain. Like many others, I had to attend medical appointments alone, including my 12-week scan. It was a solitary experience, and I felt for Sam, my partner, who was unable to share that moment with me. I had hoped that by the time the 20-week scan came around, weād be out of the woods. Sadly, I was mistaken.
On the 20th week scan, I arrived hopeful, just wanting to see our baby. The sonographer seemed pleasant at first, and we shared some laughs, but soon, I felt a shift in the atmosphere. She asked me to change positions several times, clearly struggling to get a clear image of the babyās heart. And then, the words came. āI think thereās something wrong with your babyās heart.ā My heart dropped to the floor.
In those next few moments, I was asked to wait while they brought in another sonographer for a second opinion. I was completely alone, filled with an overwhelming sense of dread. They didnāt give me much information then, but I was told Iād need to come back for further scans in a specialist fetal medicine unit.
The next few days were agonizing. I was unable to concentrate, the uncertainty gnawing at me. How could I possibly enjoy this pregnancy if something was wrong? Sam and I kept trying to stay positive, but deep down, I was terrified.
When we finally made our way to the fetal medicine center, our worst fears were confirmed. The cardiologist explained that our baby hadĀ Transposition of the Great Arteries (TGA),Ā a Ventricular Septal Defect (VSD), and aĀ possible Coarctation of the Aorta. These three conditions were incredibly serious. I was devastated. I couldn’t comprehend it. My world tilted, and the ground felt shaky beneath my feet. How could we possibly face this?
We were given three options. One was to terminate the pregnancy. The second was to let the baby be born and offer comfort care only, allowing nature to take its course. The third was to continue with the pregnancy and give our baby a chance at life, knowing that multiple surgeries would be required but that the baby could live a full life if given the chance. We made our decision immediately. No matter how difficult the road ahead, we would give our baby the best shot at life, no matter what it took.
The following months were filled with scans, specialists, and endless discussions about the complexities of TGA and the surgeries that would be required. Throughout it all, I tried to maintain some semblance of normalcy. We decorated the nursery and started preparing for the arrival of our little girl, whom we had now namedĀ Amelie. Despite everything, I couldnāt help but feel some excitement. With every kick and movement from Amelie, we grew more confident that she was strong.
OnĀ September 30th, 2020, after a long and somewhat difficult labor, Amelie was born at 4:17 a.m., weighing 7lb 3.5oz. She was beautiful and healthy-looking, pink, and breathing on her own. We had a few precious moments together before she was taken to the neonatal intensive care unit (NICU) for observation.
The next hours were a blur of worry. I was separated from Amelie after birth, and for the first time, I felt the full weight of her heart condition. I couldnāt hold my baby, and I felt the emptiness of that moment deeply. But we were able to visit her in NICU by mid-morning, and seeing her there, connected to all kinds of monitors, was a shock. Still, she was stable, and her heart seemed to be holding steady.
Over the next few days, Amelieās condition seemed stable. We were hopeful as we celebrated small milestones like her breastfeeding successfully. But things took a turn for the worse onĀ October 7th. Amelie became more irritable, her feeding slowed, and her heart rate skyrocketed. We could tell something was wrong.
By the night, she had deteriorated further. She started having blood in her stools, and her condition was rapidly declining. The doctors decided to transfer her back to PICU for intensive care and put her on a ventilator. A further X-ray revealed a more serious issueāAmelie had perforated intestines, a sign of a rare and potentially deadly condition calledĀ Necrotising Enterocolitis (NEC). We were told Amelie would need emergency surgery immediately.
I was devastated as the doctors explained what was happening. Amelie was taken into surgery, and after three long hours, we received word that her appendix had perforated and was removed. A portion of her intestines had become severely infected, so aĀ stomaĀ was placed to help protect her gut. Our little girl, just a few days old, was facing not one but two major surgeries.
Amelieās strength and will to survive became clearer each day. Over the next few days, her heart began to show signs of distress. She was not recovering as expected, so doctors decided to perform another surgery to help fix her aortic arch. It was another difficult decision. At justĀ 13 days old, Amelie was transferred to surgery once again for aĀ thoracotomy, a procedure to fix the aorta and help with blood flow.
When the surgery was successful, it seemed like we were finally on the path to recovery. But Amelie was not done yet. Less than 24 hours after the procedure, her oxygen saturation levels dropped, and her heart rate shot up. It was time for another surgery. This time, atĀ 23 days old, she underwent aĀ balloon septostomy, a procedure intended to help the blood flow more freely through her heart.
Despite all these challenges, Amelie continued to fight. And when she began to improve, we were overjoyed. After another week in recovery, Amelie was transferred back to the cardiac ward, where she began to feed more regularly and gain weight. The hospital staff marveled at her resilience. Finally, onĀ November 4th, we received the most bittersweet news. Amelie was going in for her fullĀ TGA switchĀ andĀ VSD closureĀ surgery. We had waited for this moment for so long, and we were filled with a sense of both relief and fear.
When the surgery was completed, we received the news that the operation had gone well. However, the recovery process was not as smooth as we hoped. Amelie struggled to come off the bypass machine, and doctors had to place her onĀ ECMO, a life support system, to give her heart a break. But, in true Amelie fashion, she began to improve, and soon after, her heart function stabilized.
Amelie continued to show signs of recovery, and byĀ November 17th, just two weeks after her surgery, we were told we could finally go home. ForĀ 9 long weeks, we had been at the hospital, and now, we were finally bringing our brave little girl home.
Amelieās strength, courage, and determination have taught me more than I ever thought possible. She is the embodiment of a heart warrior, a little girl who has already faced so much and continues to defy the odds. Amelie is still under the care of her doctors, but we are hopeful for her future.
Our journey is far from over, but we are incredibly proud of our daughter. We continue to share her story to raise awareness and help other families facing similar challenges. Amelieās journey has changed our lives forever, and we are so grateful for every moment we have with our little fighter.
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