The Budget Impasse Takes Its Toll
By Naomi Shapiro
On January 17, my husband and I welcomed a baby boy into our lives. Within minutes of his delivery, he was whisked to the Neonatal Intensive Care Unit (NICU) for what we were assured was routine treatment to assist his labored breathing. Shortly thereafter, we learned that it was a cleft palate that was causing his breathing troubles and prevented him from breastfeeding or taking a bottle. Not to worry, we were told, “he’ll be home in a week.” Within a few days, though, it became apparent that our stay in the NICU would be longer than anticipated.
During the course of the first two weeks in the NICU, our room was a flurry of activity – doctors, residents, fellows, audiologists, nurses, social workers, physical therapists, and occupational therapists were all in and out. At one point, we were visited by a geneticist. The list of possible ailments he presented seemed unlikely and inconsequential in comparison to some of the more acute and immediate medical issues our son was facing. After he left, we forgot that he had ever been there.
A couple weeks later as we made our morning commute to the Ann and Robert H. Lurie Children’s Hospital of Chicago, the NICU resident called to say that a genetic counselor was looking for us. Although concerned, we did not expect the news that she shared with us: our son’s genetic tests indicated that his cleft palate (and hearing loss that was discovered after we arrived in the NICU) were results of a genetic disorder. We learned that his particular disorder can cause a vast array of disabilities – some that we could test for immediately and others that would not yet be apparent, including developmental delays.
In the course of explaining what we could expect, she explained that once home from the hospital, we could enroll our son in Early Intervention, a program of the Illinois Department of Human Services that offers coordinated therapies at home or daycare. Importantly, many of the treatments that we could receive through Early Intervention would not be covered by our health insurance. During the following weeks, we came to terms with this unexpected news and grappled with how our lives might look different moving forward. Read the rest of this entry »