Brendan was born on 3/21/2016. He weighed 7.7 pounds and measured 20.5 inches long. He looked perfect, or at least normal to what we have seen for a typical born baby. We thought everything was great, but time seemed to stand still for my husband and me. The NICU doctor came to our room to inform us that our little boy had a lot of “red flags.” His became a bit jaundice, his oxygen level was low, and he struggled with sucking, breathing, and swallowing. They had to put in a feeding tube. They did more lab tests on him and found he had a hole in his heart, undescended testicles, and a spot on his kidney. Our baby stayed in NICU for 15 days. After a few months of appointments, the pediatric cardiologist ruled out that the heart murmur and his hole had naturally closed. The nephrologist checked him out and ruled out the spot on his kidney. These eased some of our worries.
Brendan had a total of 6 surgeries. These include both of his eyes (his right eye was not fully developed when he was born), hernia, orchiopexy for his undescended testicle, tympanostomy tube, and adenoidectomy. We noticed Brendan was not meeting his developmental milestones. We made an appointment and received Early Intervention Services. Our little boy was initially diagnosed with global development and speech delay, but our pediatrician referred us to a Geneticist for more tests and studies.
In September 2019, Brendan was diagnosed with this rare genetic disorder called FOXP1 Syndrome. Our Geneticist told us that Brendan was his first case. With all the evaluations and recommendations by different specialists, which include his Developmental and Behavioral Pediatrician, Brendan started ABA Therapy last year (four days a week and Speech and Occupational twice a week). These therapies really helped and we see some progress. He goes to school once a week, where he gets more sessions with Speech, Occupation and APE. Our little boy is not used to being around other kids but being in school helps him to socialize with his schoolmates. Brendan is such a happy and sweet little boy. He never fails to make us all happy!
