When All Does Not Go Well

Over at The Preemie Experiment we are talking about brain bleeds, IVHs. A brain bleed in a preemie can result in neurodevelopment disabilities (such as cerebral palsy), cognitive impairments (mental retardation), learning disabilities, and autism.

My second oldest son, by 4 minutes, did not have a brain bleed. In fact at age 2 he had a MRI, which was “entirely normal.” Yet, he has a severe mental impairment, severe autism, mild CP and is legally blind. He has some language. He can ask for “pizza”, “bread”, “suckers”, and “water.” He will ask to take a bath or to go to bed. Occasionally he puts his clothes on the right way, although more often than not, they are on backwards. Including his underwear! He was fully potty trained at age 9, one year ahead of our goal of age 10. He is not the poster child for a successful outcome in the NNICU.

What a ride he had in the NNICU. At two weeks, he perforated his bowel and needed an ileostomy, which was reversed when he was 99 days old. Clearly, having an ileostomy is very stressful. Within hours of his reversal surgery, he came finally off oxygen. He also transformed from a very placid, mellow (perhaps exhausted?) baby to a much feistier one. Not having his bowels connected took the stuffing out of him, literally as well as figuratively.

At five weeks his PDA reasserted itself and needed to be surgically ligated. The doctors also inserted a Broviac central line. Later, they found yeast in his blood. He developed inguinal hernias, which were surgically reduced at the same time his ileostomy was reversed. Finally, when he was 107 days old, he had laser surgery for his ROP. At 114 days, he came home. No oxygen, no monitors, no meds. He sat up at 6 months adjusted, crawled at 10 months adjusted and walked at 12 months adjusted. He echoed his first word at 4 ½. He began using some meaningful language at 6, if you can call saying “shelf” for “open” meaningful.

Today, he attends a center-based school where he has access to a pool for hydrotherapy, horses for hippotherapy and a well-equipped sensory room. He has been a student at this school since 2 ½. He is now 12.

On the other hand his twin brother, who had a small brain bleed, is fully included in a general education classroom doing grade level work with no accommodations. Son number 1 weighed 1 pound 6 ounces; son number 2 weighed 1 pound 7 ounces. Both were 25 weeks gestation.

Two babies, two very different outcomes.