Thank you to this month's "My Beautiful CHILD" guest blogger, Marlene Soto, for sharing her son's diagnostic odyssey.
The news that I was expecting after the recent loss of a baby was so heartwarming. I carefully followed my doctor’s orders and took my prenatal care very seriously. I was shocked when the doctors recommended we induce labor for my child’s safety. After my son, Antonio Luis, better known as Aj was born, I was only allowed to hold him for a few seconds before he was admitted to the Neonatal Intensive Care Unit. Aj was born with intrauterine growth restriction, small for gestational age, underdeveloped lungs, patent foramen ovale (heart defect), microcephaly, micronagthia, polydactly, and pectus. For weeks, I spent my days and what felt like endless nights in the hospital. It was then that I was told my son had to be seen by a geneticist because he was born with a syndrome.
As the months went by, the list of specialists increased. Appointments, procedures, surgeries and all possible genetic tests were done to find an answer. Since birth, Aj has been in and out of the hospital and has been put under for 11 procedures and studies. By Aj's first birthday, he had been put to sleep so often I had lost count. Though he's remained a happy, playful boy, as a mom, I felt depressed, unprepared and uneducated. Being disabled myself afforded me the opportunity to be there for Aj every step of the way. I'm also very involved with his medical care plan. I questioned how I could be Aj’s advocate without an education. I knew that going back to school would be extremely challenging, but I was determined to for him. I can’t imagine working full-time and making all of his appointments and therapies the way I'm able to now.
I'm majoring in psychology and hope to become a genetic counselor in the near future. What better way to pay it forward then to counsel families like mine, families that have confirmed genetic syndromes and those like my son, Aj, who have a syndrome without a name (SWAN). Regardless, the road ahead is not an easy one. So, if I'm able to help someone better understand, be more resourceful as a professional and most importantly as a mom, then I have succeeded.