The Kovarik Family

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One of the questions I am frequently asked is if I knew Ryleigh was going to have 22q. The answer is, No. I had a completely easy, healthy, low risk pregnancy and even easier delivery. Ryleigh made her entrance into this world just 45 minutes after we checked into the hospital, already showing us who was boss. We were head over heels in love. She is perfect and a daughter is the dream addition to our family. Ryleigh was born during the COVID-19 pandemic so it was extra important to me I try to nurse. However, Ryleigh was not latching. She wasn’t able to hold suction for more than a few seconds. This made things hard, frustrating, and I couldn’t understand what I was doing wrong. We have a two and half year old son at home so we had done this before, we knew the routine. At about 3 a.m. on night two, a night lactation consultant discovered Ryleigh had a cleft soft palate. This was the root cause of all her feeding issues, the spark to push for genetic testing, and what would be the beginning of Ryleigh’s 22q journey.

Ryleigh had severe feeding difficulties and weight gain issues, she would gasp for air at night, she was extremely noisy when trying to breathe, had constant nasal regurgitation, and plummeted off her growth curve down into the 3rd percentile. We made an appointment with a Plastic Surgeon at Cardinal Glennon Children’s Hospital in St. Louis, Mo to have her cleft palate evaluated and all other issues addressed. Ryleigh is blessed with an amazing Cleft Team at Cardinal Glennon that has been so compassionate to Ryleigh and our family. They started working with us at just 5 days old to help get Ryleigh on track and all the help she needs. Ryleigh’s Cleft Team referred her to an ENT to get a Bronchoscopy of her throat in which they found a Laryngeal Web and also diagnosed Ryleigh with Laryngomalacia and GERD. All of these things were part of the breathing and eating difficulties Ryleigh was having. Add this to Ryleigh’s cleft palate and we were starting to understand why Ryleigh was having such a hard time. Ryleigh endured her first endoscopic surgery at 11 weeks old. This surgery did wonders for our sweet girl and she finally started to thrive. Her eating was up, she no longer gasped at night, and she was finally able to climb into the 7th percentile on her growth curve.

On August 12, 2020 at just 14 weeks old, we received Ryleigh’s diagnosis and the root cause of all these issues, 22q11.2 Deletion Syndrome. Since then, Ryleigh has gathered a large team of doctors at Cardinal Glennon to join her through her 22q journey. Ryleigh currently struggles with an immune deficiency and is enrolled in Physical and Developmental Therapy. She will have her cleft palate fixed shortly after her first birthday in May and will begin Speech Therapy thereafter. Ryleigh is blessed with an amazing Cleft team AND GENETICS TEAM.

Ryleigh’s diagnosis is still new to us but we are doing everything we can to learn, grow, and advocate for her. Ryleigh is the happiest, most content baby we could have hoped for and we are over the moon in love with her. She loves watching her brother (although we are still working on him warming up to her), and we could not be more blessed God gave her to us. She is loved by so many and has the largest support system of family and friends.

As we continue to make strides in our 22q journey, I have found that the 22q community has the world’s biggest hearts. There are mothers out there who have reached out to us and guided us with emotional support and a greater understanding of raising a child with 22q. We know the 22q road will continue to have bumps but we are ready to face whatever is thrown Ryleigh’s way. At 5 months old Ryleigh is proving to us she will move mountains one day and will continue to show 22q who is the boss!

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