Athena’s Story: A Journey of Empowerment and Hope

The journey to protect my daughter started while I was still carrying her. At 40, pregnancy posed many obstacles, not least of which was the fact that medical professionals classified me as being “advanced maternal age.” Every time I went to the high-risk doctor for an ultrasound, I felt a knot in my stomach, worrying about potential health problems. Although I had intended to have a c-section due to her health concerns, as the saying goes, you can make plans but you can’t plan for the outcome.

My daughter Athena arrived on her terms. It was November 1st, 2021, and I was 36 weeks into my pregnancy when my water broke. In the early morning hours, my little warrior was born, weighing only 4 lbs and 4oz. I recall lying on the table after the delivery, not hearing her cry, which was a frightening experience. Despite not being able to move, the moment they brought her over to me, I fell deeply in love.

Her sweet and calming energy left a lasting impression on me. On the first night after Athena’s birth, I remember visiting her in the NICU, feeling overwhelmed and uncertain about what was happening. I had no prior knowledge of the NICU or what it entailed. Every day, I would sit by her side and watch her sleep, filled with fear and uncertainty. I quickly realized that the question “when will your baby leave the NICU?” was one that often went unanswered. A helpful tip from a dear friend was to ask specific questions instead.

A few days after Athena’s birth, a genetic doctor requested to test her due to multiple abnormalities, to determine if the issue was genetic or chromosomal. Two weeks after her arrival, a congenital doctor entered her room while I held Athena. The geneticist was waiting for other doctors to arrive, and I recall wondering why she was waiting. The first words she spoke were “Trisomy 9 Mosaicism” and “fatal,” which I interpreted as a devastating diagnosis. As I processed the news, my thoughts turned to the future.

The geneticist informed me that a full Trisomy 9 diagnosis often leads to a miscarriage, while those with partial Trisomy 9 generally do not survive past infancy, and Trisomy 9 Mosaicism, a portion of the chromosomes carries the extra 9th chromosome. When she handed me Athena’s report and the results read Trisomy 9 Mosaicism (T9M) and then asked if I had any questions. My response was that without a guarantee of Athena’s symptoms, I couldn’t focus on the potential outcomes. At the time, I was completely unaware of T9M and how it would affect my daughter. I was determined to take things one day at a time.

From the moment of her birth Athena struggled to consume enough milk from a bottle to maintain a healthy weight. Her doctor recommended a g-tube be placed in her stomach, but the thought of a one-month-old undergoing surgery was initially overwhelming. However, after talking with her doctor and some amazing individuals, I decided that a g-tube would give Athena the best chance at thriving. Most medical professionals assured me that the g-tube procedure was routine and would only take 45 minutes. But after an hour passed without any updates, I knew something was wrong. The feeling of unease in my gut was confirmed when the doctor came out and informed me that they had attempted to place a breathing tube for over an hour but were unable to do so and had to cancel the surgery. The surgeon was kind and apologetic, and I couldn’t help but break down in tears. The setback only strengthened my resolve to advocate for Athena.

When Athena was brought out, I was horrified to see her breathing rapidly, the most frightening moment I had experienced in the NICU. They immediately took her to the most critical part of the NICU to provide assistance. Her doctor was comforting and the nurses allowed me to kiss her goodbye. This was the first of many times I had to say farewell to Athena during her first 6 months of life. The doctor explained that Athena had a large epiglottis that was angled in a way that made it almost impossible to insert a breathing tube. She expressed her concern and stated that Athena could not be released without undergoing an airway evaluation. However, there was a chance that Athena might need a tracheostomy in order to successfully undergo surgery.

When I first heard the word “tracheostomy,” I envisioned a valve or a large opening in her neck. Up until that point, Athena had never required oxygen and was breathing on her own. The thought of a tracheostomy was extremely frightening. However, after talking with my family, friends, and doctor, I realized that it was the best option for giving Athena a long and healthy life.

On January 11th, 2022, Athena underwent surgery for both her g-tube and tracheostomy. Despite reassurances from others that it was a routine procedure and that she would be okay, I could only cry and pray. When they brought her out of the surgery and I saw that she was breathing easily, I was overwhelmed with relief. I don’t regret the tracheostomy for a moment and would make the same decision again in a heartbeat. I am grateful for the medical interventions that are available to give her the best possible chance at a long and healthy life.

The months following Athena’s procedures were long, but it was incredible to witness her growing and thriving. Finally, the best news any parent or caregiver could receive arrived: a discharge date from the NICU. We spent two nights in the hospital to ensure we were fully prepared to care for Athena at home. The night before we took her home, she held my hand and gazed at me with the same peaceful look that she had months earlier. The sight brought me to tears. For four months, I was constantly on edge, fearful that Athena would never leave the hospital. Those months were filled with a mix of fear, sadness, and joy. But on March 8th, 2022, Athena graduated from the NICU. This was a new chapter in our journey together.

The months spent at home with Athena were wonderful, and I cherished every moment. Many people complimented me and said that I inspired them and was the perfect mom for Athena. While I appreciated their kind words, I always felt that being a mom was simply what parents do. Athena’s dad reminded me that not every mother would be able to care for a baby with such complex medical needs. Caring for a child with these challenges is a difficult and frightening responsibility, especially when it comes to ensuring her airway. Despite the

challenges, I wouldn’t change a thing. Athena has taught me about resilience and the importance of never giving up. She is my greatest teacher and source of strength.

In brief: Athena is now 14 months old and continues to be a joyful little girl. She loves playing with light-up toys, listening to stories, and taking walks. I know that every NICU caregiver’s journey is unique, but I see you, I stand with you, and I am here to support you.I am a fellow NICU mom and I understand the love you have for your child.

And so, Athena’s story continues, filled with love, hope, and resilience. Despite the challenges she faced, she has become a shining example of strength and determination. As her NICU mom, I am proud of her and the person she is becoming. Athena’s journey has not only impacted her life, but it has also touched the lives of everyone around her. I am grateful for each day that I get to spend with her and I look forward to watching her continue to grow and thrive. Athena’s story is a testament to the power of love and the human spirit.”