Quote from mom: “Dr. Mehta, of course, is AMAZING! She is always happy and bubbly and she has the best laugh! We love it. She is so down to earth, but can be matter-of-fact when she needs to be, such as during this last visit with Aryana when she was discussing Aryana working – ha!”
At around 24 weeks pregnant, my OB found fluid on Aryana’s kidneys and referred me to a specialist in Pensacola. I was told that this was normal, so I went alone. At the appointment, after many ultrasound images, the doctor abruptly shifted the conversation to Aryana’s heart. He gently explained that there was a hole in her heart, often seen in babies with Down syndrome, and suggested an amniocentesis for confirmation. A week later, I learned she had Trisomy 21 and was referred to Dr. Mary Mehta, whose caring team put me at ease. We knew Aryana would need heart surgery around three to four months old.
At my last appointment before her birth, Dr. Mehta advised me to schedule a follow-up for a week after. When we returned, the news was dire. Aryana was in heart failure due to her aorta starting to close and she needed immediate surgery. I had two choices: life-flight her to Orlando or drive her myself. At a different hospital, they attempted balloon angioplasty but it didn’t work, leading to open-heart surgery at three weeks old. Aryana spent thirty days in the hospital, and now, 20 years later, we continue to see Dr. Mehta.
After returning home from heart surgery, we had frequent checkups with Dr. Mehta, but for several years now, we’ve only needed annual appointments. Each visit has yielded positive reports, and Aryana’s scar has healed beautifully. She shows no issues or complaints, and if you met her, you would never guess the challenges she faced before turning one month old.
What Does the Future Look Like For Your Family?
Aryana says, “I do not accept (going to or getting) work. It seems like hard work.” Yes, it is! Ha!
I am looking into possibly getting her involved at Westonwood Ranch as they have programs for children / young adults with disabilities. I think something alongside others like her would be a good fit. They have farm animals, a little corner store, a garden, and even dog biscuits! With all of the different options, I think it would help to determine what suits her.
One of our biggest adventures so far was SKYDIVING for her 18th birthday! She had been asking to go since she was a little girl and maintained this idea all the way to her 18th birthday. I was shocked! She was excited watching the jumpers ahead of us and getting on her flight gear. She wasn’t nervous in the plane (I was lol!) and was the first jumper out the door! She screamed during the free fall but once the parachute opened she was all smiles. The instructor even let her operate the parachute. She had so much fun that she wants to go again!
Advice for Parents
Don’t hesitate to ask questions! Aryana’s team at Nemours has always been fantastic, providing thorough explanations. With her Down syndrome diagnosis, I’ve learned that knowledge is power; it enables you to better advocate for your child. If a doctor, teacher, or daycare doesn’t meet your expectations, don’t be afraid to seek alternatives. We’ve been fortunate to have excellent doctors at Nemours, but not all were great, prompting us to continue searching until we found the right gastroenterologist. Always ask questions, advocate, and seek out those who genuinely care for your child—it makes a significant difference.
