Victoria Faith Hall
VACTERAL Syndrome – in utero diagnosis, B-T shunt (CMC),1st stage Fontan (last stage still to be completed) – Children’s Healthcare of Atlanta, T.E. Fistula Repair, Tracheostomy, Nissen Fundoplication, and G-tube
Date of Birth: October 30, 2006
Our daughter, Victoria, was born 10 weeks premature on October 30, 2006. My husband and I had been trying to have a child for 6 years, and Victoria was the result of a first try in-vitro fertilization after years of trying other therapies and options. Financially, we could only afford one try and we rejoiced with the news that we were successful and expecting our first child.
An ultrasound at 12 weeks revealed there was an issue with our unborn child. After prayerful consideration, my husband and I agreed to an amniocentesis where a chromosomal abnormality was ruled out, however, a serious heart defect, Tricuspid Atresia, was revealed.
At our monthly ultrasound in early October, it was also suspected that our child had a defect in the esophagus. Nothing could be confirmed until delivery.
Then, late October, I was admitted for early labor and after 4 days of trying to prevent delivery, our child decided it was time to enter into this world. Our beautiful daughter, Victoria Faith Hall, was born at 10:16 pm on October 30th weighing 2 pounds, 15 ounces and 15.5 inches long. She had dark hair and was the most beautiful sight I had ever seen. After she was stabilized in the NICU, her esophagus deformity was confirmed as a T. E. Fistula which means that the esophagus had attached to the trachea and she was not able to swallow into her stomach. Fluid would simply collect at the connection site. This would have to be surgically corrected as soon as Victoria was strong enough. Thankfully, her heart was doing well and the correction was delayed in order to deal with her other issues. Renal and Vertebrae abnormalities were also confirmed and Victoria was officially diagnosed with VACTERAL syndrome (also known as VATER).
Victoria is now 2 years and 8 months old. She has endured 5 surgeries (two of which were open heart). She spent 7.5 months in a NICU and has a trachestomy and G-tube. She has had multiple chest tubes, interventions, and pneumonias. She is, by far, the most remarkable person I have ever had the pleasure of knowing. Despite her rough start in life, she is signing to communicate and verbalizing over her trach, she walks and runs, she loves to “read” books, interacts well and is developmentally on track with the exception of speech and eating. As my husband and I have come to realize and know, with full understanding, parenting a child with any type of delay or health issue is a privilege and challenge. We are thankful each day that Victoria is here and doing so well – she is the result of God’s faithfulness, skilled and talented surgeons, physicians, nurses, and therapists. Our vision for Victoria from the very beginning was that she have as normal a life as she could. She is unique and special in every way – her personality is one of perseverance and stubbornness – yet, at the same time, she is loving and caring. We seem to define “it takes a village to raise a child”. We are here to proclaim that there is no limitation to what a special child can do when they are properly nourished in every category. My husband and I have always done what is best for Victoria and we have been able to do so because of the marvelous support of those around us. How fortunate and blessed we are by church, family, friends, colleagues and even strangers that have amazed us with their open and giving hearts. It has been and continues to be one of the most humbling and inspiring experiences for our family.
Victoria faces one more heart surgery and a surgery to close her trach when the time is deemed appropriate. She will live with a physically imperfect heart but, in her dad’s and my eyes, she is perfect in every way. She is a testament to love - God’s love for His children, her dad’s and my love for one another, the love that we have for her, and the love of our family and friends. It is amazing to us that a child who has endured so much has such capacity for joy in her own life. She is now setting a wonderful example for her younger brother, Nathan (HH) who joined our family in February 2008.
Elizabeth Hall "Mother"