Having covered Prenatal Testing (Ch. 2), Abortion (Ch. 3), and Down syndrome (Ch. 4), we now turn to the subject that most new and expectant parents wonder about and are surprised to learn about: the support that is available for individuals with Down syndrome and their families.
When a pregnant mother arrives for her first prenatal visit, one of the things that will be on her obstetrician’s mind is to counsel her about prenatal testing. If she accepts prenatal testing and a screen positive or positive diagnosis is returned, one of the things her obstetrician will counsel her on is abortion. The obstetrician, or genetic counselor, or one of the office staff will also talk to the expectant mother about what Down syndrome is, with that description detailing the attendant intellectual disability and medical conditions. Odds are, though, that what the expectant mother will be told, will not address her main concern.
In 2011, a group of genetic counselors surveyed medical providers and parents of children with Down syndrome and asked them what they thought was most important for new and expectant parents to know about having a child with Down syndrome. Each responded based on the lens through which they had been trained and had gained experience. Of the dozens of topics identified by the respective groups, there were thirty-three areas they shared in common. Those were ranked by the respondents on importance.
For health care providers, the top four of five topics to address were: intellectual delay, heart defect possibility, developmental delay, and the need for diagnosis by chromosomal analysis. For parents, their top five topics were: early intervention therapies, that children with Down syndrome had more in common with other children, contact with families raising a child with Down syndrome, and the need for early intervention case management. The third ranked topic for parents was the fifth for providers: local support groups.
What the rankings show is that, not surprisingly, health care providers first look to the health effects of Down syndrome. For parents, what they first want to know is what may this child be like and what support is available.
This focus on support is also what mothers who opt to terminate cite as their reason for ending their pregnancies. While studies of these mothers is few and far between, those that do exist report a concern about being able to care for a child with a disability. These mothers report that these are wanted pregnancies, which stands to reason given that they seek out prenatal care. But, when the unexpected diagnosis is delivered, they are concerned about, in order, the effect of raising a child with Down syndrome will have on their marriage, their other children, and on the child with Down syndrome, particularly about who will care for the child after they have passed on.
Having stood exactly in these parents same shoes when we were surprised with the diagnosis in the delivery room, what I was equally, and then increasingly more so, surprised by was how much support there was available for Juliet and our family. I will detail this support in the order that professional guidelines recommend it be delivered to families and, by experience, how families connect to these multitude of available supports.
Speaking of support, we have now entered the last chapter I have drafted, and it’s not complete, yet. As I said when I began this serialized publication, I am hoping encouragement from readers will help me overcome the years-long stall to my writing the completion of the book. Thank you in advance to those who offer words of support and encouragement.
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