Young heart patient 'thriving and crushing every goal'
Less than a year after her successful open-heart surgery at Kentucky Children’s Hospital, 15-month-old Adalie Faith Thomas is “thriving and crushing every goal given to her,” her mom says. About half of all children with Down syndrome are born with a heart defect. The most common is an atrioventricular septal defect (AVSD), a large hole in the center of the heart, which was Adalie’s diagnosis. Here, Trish Thomas shares the story of her daughter’s journey and the joy that Adalie brings to everyone she meets.
By Trish Thomas
Kentucky Children’s Hospital has been like a second family to us. We have worked closely with our amazing doctors and nurses here to ensure our baby girl, Adalie, was successful in her journey to make it where she is today.
Our journey with our precious baby girl started very early when I was only 11 weeks pregnant. My husband and I were informed that my genetic test came back 91% Trisomy 21 positive, and that my OBGYN wanted to see me immediately. I called my husband, and we had our first ultrasound concerning her diagnosis. We were then referred to UK to see Dr. (Kristopher) Cumbermack who became our pediatric cardiologist. We were seen at 16 weeks and an ultrasound of her heart was performed. They found that she had an atrioventricular septal defect known as AVSD. This meant that all four chambers of her heart were open and that her two main valves were fused together. This diagnosis would definitely require surgery for her to survive.
Every appointment was scary and heartbreaking. My high risk specialist never had any good news for us as we faced each week, month and trimester. Each appointment we feared something would come in the way of her making it at all. Besides her heart defect, she also had to overcome other health issues that could affect her because of her genetic abnormalities. But through many prayers and trusting our health professionals, she overcame each and every one. When I was 30 1/2 weeks pregnant, I got COVID-19 and had to quarantine for 10 days. During that time, I was only hospitalized once. Later we found that I had lost a significant amount of my amniotic fluid. Adalie was in trouble, and I was told one week before she was taken by emergency cesarean that she may not make it. Adalie Faith Thomas was born 7 1/2 weeks early on Dec. 10, 2020, at 3.67 pounds and only 14 inches long.
The care we received between the time she was diagnosed at 16 weeks and when she was born at 32 1/2 weeks was amazing. The staff that worked with us in the neonatal intensive care unit, the pediatric intensive care unit, cardiology, speech therapy and our social worker were so welcoming and made our experience at UK one to remember. Because of their impeccable care with our precious Adalie, she was able to excel in her growth, skills and thrive!
Adalie had open-heart surgery on May 26, 2021. This was by far the scariest experience we’ve had to go through. By the time she had her surgery, we had already spent a lot of time in and out of the PICU and we were very familiar with the doctors and nurses who took care of Adalie when she came out of surgery. Adalie spent nine days in recovery, and then we got to bring her home yet again. But this time she was a completely different baby. You see, Adalie had a feeding tube in March of 2021 because she wasn’t able to eat and breathe at the same time. Here we are less than a year from that day and she has had the tube removed and she healed within days. After her open-heart surgery at 5 1/2 months of age, she is thriving and crushing every goal given to her. She attends physical therapy, occupational therapy and speech therapy. All of her therapists are amazed at how fast she learns. Her loving, sweet, caring and yet determined personality fills the room and people just can’t get enough of her. She is now 15 months old and is obsessed and trying so hard to walk. She can eat solid foods, gives you a “high five” when asked, claps her hands, sits up like a champ, army crawls, and will give you lots of kisses. She is hands down the sweetest baby and has brought so much joy to our lives. We are eternally grateful for the opportunity to be her parents. Without the help of Kentucky Children’s Hospital, we would not be where we are today.
Adalie’s Down syndrome diagnosis is just the start of something beautiful that makes her unique. It does not define who she is but it excels her rate at making people happy and finding happiness in the little things that are most often taken for granted. Her ability to make people smile is so rewarding to watch. She absolutely brightens every room she goes into, and I cannot wait to see what she does with her infectious smile and her pure determination to meet her goals in the future. We are T21 Proud!!!! Adalie Faith Thomas, you are such a gift that we are so very honored to have in our lives.
