Having a child is often the most exciting and amazing day of an adult person’s life. A new baby really changes everything about your life for the rest of your life. Every child is different, and sometimes those differences manifest as special needs. According to the National Survey of Children With Special Health Care Needs, 12.8% of children under the age of 18 of special healthcare needs. [1]
Children with special health care needs are defined by the U.S. Maternal and Child Health Bureau as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” [2]
These needs obviously vary in severity. Children with Down Syndrome, for example, do present some unique challenges, but a lot of stigma around Down Syndrome is the result of misinformation, according to Stephanie Meredith.
Meredith, the author of Understanding a Down Syndrome Diagnosis, told Parents “Most of the misinformation that exists is simply outdated information before early intervention, inclusion, and progressive healthcare were the norm. Since society has begun investing in children with Down syndrome, life expectancy has doubled to about 60, and people with Down syndrome are increasingly completing high school, attending special college programs, and living independently.” [3]
It is natural for a parent with a newborn recently diagnosed with Down Syndrome to feel overwhelmed. That was certainly the case for Evgeny Anisimov, a 33-year-old Russian father, who learned of his son Misha’s Down Syndrome diagnosis only about a minute and a half after birth.
“I didn’t know what to do when I learned of the hypothesis that my son had Down Syndrome,” he recalled that day. “I thought my task now was to turn off emotions, ignite thoughts, and support my wife because I believed it would be more difficult for her. The results of the analysis were promised in a few days, and until then, I decided not to say anything to her.”
Anisimov recalls crying at the hospital, but pulling himself together for his wife and baby boy. He went home and began researching Down Syndrome, as he admits he had no real prior knowledge of what Down Syndrome was. He learned that, unlike what you might expect, many children with Down Syndrome grow up to be “well socialized and can live and work independently.”
This was encouraging to Anisimov.
“My determination, activity, curiosity, and so on—everything was with me,” he said. “Everything happened as I planned, my son was born. But the child is special, his life and future destiny are already very significant. And I’m roaring here! This is some kind of selfishness! Is it not fair? No, it is my responsibility. You did not have an amniocentesis—it is clear that the probability was low, but still. You wanted a child, so you took responsibility for it. After all, there are many options: autism, cerebral palsy, genetic mutations… And Down syndrome is not the worst, as I learned later.”
An inhumane choice
Unfortunately, his wife did not share his zeal for raising their new baby boy. She requested that Misha be taken to an orphanage, but Anisimov refused. His wife was not prepared for the commitment, and in the end, the couple separated.
According to Anisimov: “When I made the decision, I had not yet thought about the likelihood of an optimistic scenario. I thought: well, he’s going to enjoy the sunrise, I’m going to take him out to barbecue, and he’s going to live his life. Yes, maybe he seems unhappy to someone, but he will have his own life. At no time did I think of leaving my son in an orphanage. That would be inhumane.”
Anisimov wants other parents to know that they should be brave for their children, especially those with special needs, and that “everything will be all fine.”
But he pushes back on the idea that he’s anything special. Some on the internet have called him a superhero, but he insists he’s a normal person. As a father, he’s doing everything he can to provide for his child and is also raising awareness for children born with this condition, hoping to help parents understand that with care and attention, their children can grow up to be happy, productive adults too.
References
- “Prevalence of Children with Spacial Health Care Needs.” HRSA. Retrieved November 25, 2020.
- McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff J, and Strickland B. A new definition of children with special health care needs. Pediatrics 1998;102(1):137-140.
- “How to Raise a Child With Down Syndrome: Advice and Resources” Parents. Amy Julia Becker. Retrieved November 25, 2020.