We reside in Iceland. At 30 weeks into my pregnancy, I learned that my unborn daughter had pulmonary atresia with intact ventricular septum (PA/IVS). I consider myself fortunate that this condition was detected while I was still pregnant. However, this revelation came shortly after we had to evacuate our town because of possible volcanic activity, and just days later, my partner’s mother passed away. We were still grappling with our loss when we received this news, leaving us in a state of complete shock. All of this unfolded within a mere three weeks, and I questioned how much more we could endure.
We were given ten weeks to prepare for her arrival. I must admit, it was a challenging time; I spent many nights in tears, contemplating how living with CHD would impact her life and ours, especially considering the treatment we would seek in Lund, Sweden. Thankfully, we had a strong support network, including our families, the medical team in Iceland, and a few close friends who provided immense assistance during this difficult period.
The day finally arrived. On the night of January 29, 2024, at around 10:00 PM, Matylda Barbara was born. I held her for a brief five seconds before the medical team took over.
Six days after her birth—initially planned for three, but delayed due to inclement weather—we set off for Lund to obtain the specialized treatment she required. Matylda was placed in an incubator and transported by air, accompanied by a doctor and nurse who would be by her side throughout the journey, ready to assist if necessary.
We arrived at Lund hospital at 10:00PM, and by 8:00 the following morning, her first intervention was successfully completed. The agonizing hours spent waiting for the doctor's call felt like an eternity, consuming me with anxiety. I was terrified of what the outcome might be.
Fortunately, everything turned out well. While some days felt brief, many others stretched endlessly during our time in the hospital. Having my partner and our three-year-old toddler with us throughout this journey has made for a unique experience. I am truly grateful to God for their presence and support.
Three weeks later, she required another intervention, during which a stent would be inserted. All the emotions I had been experiencing surged back as she grasped my finger in the operating room. When she released my hand as they put her to sleep, my heart filled with sadness, and I couldn't hold back my tears.
Leaving her in the hospital each night, unable to stay by her side, shattered my heart. Every midnight, I would call her room to check in with the nurses about her condition. For an entire month, this became my routine. Then, as soon as I woke up, I would rush to her side and remain with her throughout the day and into the night.
This entire ordeal filled me with frustration. I longed to scoop her up from her bed and hold her in my arms, but the wires, IVs in her hands and feet, and the feeding tube in her nose kept me from doing so. It brought me to tears and made me wish for this difficult time to end soon.
After a month and a week in Lund, we were finally able to return to Iceland. The doctors assured us that she received the necessary treatment. However, less than two months later, we had to go back for a follow-up balloon vulvoplasty.
The second trip was shorter, but even now, I still experience flashbacks of our time in the hospital. Those memories linger, reminding me of the challenges we faced and the emotions we endured.
It may be hard for us, but I want to remind her that this is her fight, and she has always shown incredible resilience throughout it all. Despite being just a little baby, she has faced so many challenges and has overcome them with such strength. Her spirit inspires me every day, and I believe that her determination will continue to guide her as she navigates through this journey. Together, we will celebrate each small victory and keep pushing forward, knowing that she is capable of so much.
We understand that the road ahead may still have obstacles, but we are ready to face them together. With each step, we will continue to learn, adapt, and grow alongside her. She is not alone in this journey; we will be her biggest advocates, her safe haven, and her source of strength. Our lives may have changed, but the love we share is a constant that will guide us through anything that comes our way.
Through it all, I strive to create an environment filled with love and positivity for her. I want her to know that she is cherished and that her journey, while difficult, is also filled with opportunities for growth and joy. As she continues to grow and overcome obstacles, I will be there, cheering her on and reminding her of the warrior within her.
