MARENRetrun to 22q Stories
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Maren was born on June 18, 2004. Right away, there were signs that something wasn’t right. Maren was unable to nurse and she turned blue and had nasal regurgitation during bottle feeds. When we were discharged from the hospital, the neonatologist’s last words were “She’s fine. She\’s just going to be more difficult than most.” Maren continued to have difficulty with feeding. She also began having ear infections and upper respiratory infections. At each doctor visit we were given new formulas to try and new medications for acid reflux. Nothing was helping my baby. When Maren was five months old, I took her to pediatrician number six. As part of her examination, she looked in Maren’s mouth. She put her light down, looked at me, and said “Has no one ever told you that your baby has a cleft palate?” Through a flood of tears, I was able to mumble “no”. We had also noticed that Maren had a spot on her eye. It was later diagnosed as an iris coloboma. The pediatric ophthalmologist suggested that we see a geneticist because of Maren’s history. We got the diagnosis of 22q11.2 deletion syndrome in August of 2005. Maren had developmental delays as an infant. She never crawled and was a late walker. Today, Maren is a second grader. She loves animals, art, and playing her violin. She struggles with expressive language and mild cognitive issues, yet she is on the honor roll at school. She has had two corrective surgeries for her cleft palate and she will have a third this summer. She has also had ear tubes eleven times. Despite her health issues, Maren is a happy 8 year old. She makes me proud every day.