Having a Child with Down Syndrome

In January of 2017, we worked with Whitman Wellness Center, in Whitman, Massachusetts to launch a yearlong service project benefiting the Massachusetts Down Syndrome Congress (MDSC) with the aim to educate people about Down syndrome (DS).

• One in every 691 babies in the United States is born with Down syndrome – about 6,000 each year—making it the most common chromosomal condition in the United States. There are an estimated 400,000 individuals in the US living with Down syndrome.
• Down syndrome occurs during, or right after, conception when an individual develops a full or partial extra copy of the 21st chromosome. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called trisomy 21. No one knows exactly why this extra full or partial chromosome happens; however, maternal age, and to a lesser extent, paternal age, has been linked to an increased chance of having a baby with this condition. Even thought this condition is genetic, only 1% of cases are hereditary.
• Down syndrome can be diagnosed prenatally through diagnostic tests, which gives a definitive diagnosis, or screening tests, which gives a probability, or likelihood, that the child will have the condition. It can also be diagnosed after birth through a chromosomal analysis called a karyotype.

These are some of the “facts” of Down syndrome and there are many others that are frequently discussed with families as they learn that they are having a child with Down syndrome. None of these facts, though, will prepare you for the joy, gratitude, and depth of community you find when having a child with Down syndrome. When I was pregnant with our daughter, Julia Grace, I went to the MDSC conference, which they host once a year for families and professionals to learn about issues related to DS. When I arrived I almost immediately ran into a woman who said to me “you might not be able to imagine it now but this is a blessing bigger than you could ever imagine. The DS community is amazing.” I wasn’t devastated by the news that Julia Grace had DS but neither was I convinced that I would ever consider it a blessing. But, here I am a year later; my daughter is almost 9 months and I do mostly consider her diagnosis a blessing. The friendships I’ve made and the support I’ve received from the Down syndrome community constantly astounds me. We are a big, eclectic family. We consist of every race; ethnicity; religious and political preference; small families and big ones; young parents and older ones, single parents, gay and lesbian parents, and adoptive parents. The one thing that we all have in common is that we adore our children and that we are invested in each other’s children as if they were our own. We celebrate every milestone together; we lift each other up in every difficult time; we offer words of encouragement, excitement, and hope. We accept our children’s diagnosis to varying degrees depending on the day but one thing is for certain, and that is that we are never alone. And that’s the most important fact.