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A Little Girl with a Big Heart and Sweet Soul

At 30 weeks pregnancy, my doctor shared her concerns with me about the rate my daughter was growing. Due to Addilyn measuring smaller than the average baby I was referred to and followed by a perinatologist weeks prior to Addilyn being born. After numerous tests and weekly ultrasounds, I was relieved with the news that my daughter was simply smaller. To take all precautions, I was still strongly advised to go through with an early induction. So, at 38 weeks pregnant, I arrived at the hospital anxious and excited to meet my baby girl. Little did I know what was ahead of us.

On November 10, 2016 I held my beautiful daughter for the very first time. I will never forget the day Addilyn was born, as many parents will recall, it is an indescribable moment filled with an overwhelming amount of love and joy. While I was able to cherish this moment briefly, my heart was shattered within hours when Addilyn was diagnosed with three heart defects, a VSD, PDA, and PFO. After receiving the news, I remember trying to quickly comprehend and grasp this new reality while I watched the doctors perform numerous echoes on my innocent baby girl.  The cardiologist quickly sketched a picture of my daughter’s heart while describing her various congenital heart defects. As a parent, I completely broke down with overwhelming fear. I attempted to find clarity while standing next to Addilyn, which was nearly impossible during that time. I felt numb and helpless; my heart was extremely heavy for my daughter. In addition to Addilyn’s congenital heart defects, the doctors had other concerns. She was struggling with tremors, low birth weight, and feeding difficulties, which lead to the diagnosis of her cleft palate. She was extremely frail and appeared to have very distinct features, such as long fingers and toes, an asymmetric cry face, and a distinct facial structure. The first couple of months of Addilyn’s life was filled with endless doctor appointments and unanswered questions. There were numerous nights where I sat on the edge of my bed with a heavy heart begging God to let this nightmare end. All I wanted was for my daughter to be healthy and happy.

While the list of concerns for Addilyn grew, I was terrified and frustrated with only being left with unanswered questions, until we had our first appointment with Sibley. From that appointment on, Sibley has become one of the biggest blessings in Addilyn’s life. We are so grateful for all that they have done for us, especially Dr. Iannucci, who has played a major role in assisting us in paving a bright and healthy future for Addilyn. Dr. Iannucci has been Addilyn’s cardiologist from day one and has continuously shed a positive light in her life, given us hope and the answers we were searching for. He quickly set up Addilyn’s genetics appointment leading us to find out, when Addilyn was only two months old, that she has a chromosomal deletion abnormality known as 22q11.2 Deletion Syndrome or DiGeorge Syndrome. Sibley continuously monitored Addilyn’s heart defects and her conditions closely for the first few months, easing my fears as a parent and discovering the underlying issue to other conditions Addilyn struggled with on a daily basis. When Addilyn was four months old, Dr. Iannucci diagnosed her with a right sided aortic arch with aberrant left subclavian artery which formed something known as a vascular ring, leading to her first surgery at six months old. Addilyn surpassed all of my expectations while recovering from her vascular ring repair. Although she excelled tremendously, there is no denying that from a parent’s perspective the entire experience was nothing but frightening. I was not prepared for the emotions and fear I felt before Addilyn’s heart surgery or how it tore me to pieces while I watched her in pain following the surgery.  As a parent, it is difficult to walk into a room and witness your happy and sweet baby lying in a patient bed connected to numerous machines. During that time I realized that as painful as these moments may be, I witnessed the endless amount of bravery and strength my daughter has, which is what helped me push through these challenging moments. I realized that as a CHD parent we are our child’s biggest and strongest advocate, we are their biggest cheerleader, we are their main support system. I realized during that time how imperative it is to put on a brave face for our children even during some of our weakest moments.

Today, I look at Addilyn and see the endless amount of potential she has within her.

I see her scar daily, which has become a reminder of the journey she has already experienced and the various battles she has already overcome. During the first couple of months of Addilyn’s life I became so overwhelmed with numerous emotions and fixated on the concerns I had for her future, that I was naïve to the fact that this was just the beginning of a very powerful journey- Addilyn’s journey. Addilyn is now two years old and has a personality that continues to shine even more every day. Her love for life is evident in everything she does. Addilyn is a precious little girl, with a big heart and a sweet soul, who is so loved. She loves to listen and dance to music, she has a soft spot for all animals, and has a spunky personality that continuously makes us laugh.

In hindsight, although there have been many trying moments I wouldn’t change anything about Addilyn’s journey. It is her story, a story that she can always be proud of. It is the journey that has helped mold her into the strong and determined little girl she has become today. We are so grateful for the endless support from Sibley and Children’s Healthcare of Atlanta, because of these incredible individuals I have a healthy and happy little girl.

To say that I am proud of my daughter and all that she has accomplished would be an understatement. Addilyn went from having three heart defects and a vascular ring, to a thriving toddler with a healthy heart. We are so blessed to say that Sibley has continuously been by our side every step of the way and will forever be grateful for their endless support.

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