For Father’s Day: what to do after a Down syndrome prenatal test result

The author with his daughter (neither in Michigan nor Saskatchewan)

Last week, a mom posted what she would like a mother with a Down syndrome prenatal test result to know. It inspired Tim Shriver, Chairman and CEO of Special Olympics, to offer his own thoughts. So, for what it’s worth, on this Father’s Day, here’s my two cents.

As nice as the mom and Tim’s sentiments are–and they are–they do not reflect most fathers’ thought process upon learning they may have a child with Down syndrome. This is not meant as a criticism. Frankly, the experience of fathers with a prenatal test result is a huge blind spot in the research.

There are studies upon studies, even whole books, written about mothers’ views of prenatal testing for Down syndrome. But there are very few that concern fathers. Perhaps that’s fair. After all, as Jim Gaffigan jokes [paraphrased], women are amazing: they can grow a baby in their body, deliver the baby, and then feed the baby. The male contribution to life is 5 seconds doing the thing he thinks about 24 hours a day. So, the scant research on fathers’ experiences with prenatal testing may be explainable.

That said, here are some basics that I found apply generally (understanding there are exceptions that prove the rule):

1. This is not what you signed up for.

Originally, this was drafted to say, “This Sucks.” Because, receiving a test result for Down syndrome is generally one described as sucking. But, then I know several families who describe receiving a prenatal result for Down syndrome as a relief. They had earlier testing that suggested a more debilitating, in some cases, fatal condition.  So, finding out their child “only” has Down syndrome is a relief (again an example of the exception proving the rule).

But, generally, it can be a sucky experience. I’m a father whose oldest, my daughter, has Down syndrome. I do not mean being her father sucks or that her life sucks. But receiving the diagnosis sucks. You’re in shock, gut-punched, a cold bucket of water thrown in your face, and sunk down in a deep hole–all metaphors I have heard fathers use. Worse, more likely than not, this state of shock resulted in some tears on your part, and, likely, you haven’t cried in a long time and you don’t like crying.

All of that, though, is actually okay. This isn’t what you expected. You don’t know what “Down syndrome” means for the future. And, the little you do know is likely not good. So then …

2. You need more information.

As this video tries to demonstrate, while your partner may need to talk about how she is feeling, you are trying to fix the situation.

Except you can’t. And you don’t quite know what even the situation is.

Absent having had a previous relationship with a family member, a neighbor, a classmate, a co-worker, or some other interaction with a person with Down syndrome, you have had very little exposure to a life with Down syndrome. What you do know is associated with words like retarded, slow, sweet, protruding tongue, special ed, institution, and maybe even mongoloid.

Fortunately, there’s information out there. Heck, that’s probably how you found this post. But Googling to discover what “Down syndrome” means has probably led you to sites where some consider that people, particularly kids, with Down syndrome are angels sent from heaven and other sites where other people consider them burdens on society. I would not recommend relying solely on the interwebs for your information on Down syndrome.

The pros–your wife’s OB and the genetic counselor you may have been referred to–offered you prenatal testing because their professional society guidelines recommended that it be offered to all pregnant women. Those same professional guidelines recognize a select few resources to review. These are available at the “Prenatal Resources” page on this website. But, quickly here they are:

• “Understanding a Down syndrome diagnosis,” is recognized by the American College of Medical Genetics (ACMG) and the National Society for Genetic Counselors (NSGC) as an approved resource for someone like you receiving a prenatal test result. Representatives from the American College of Obstetricians & Gynecologists (ACOG) and the national Down syndrome organizations also provided input into this booklet. A copy is available for free to your health care provider and you can also view it on-line.
• The BrighterTomorrows website is another resource that has a lot of content, including individual family stories. This website is also recognized by ACMG and NSGC as an approved resource. (Much of what I’m covering here you can watch in an interview of me on that website).

While recognized and approved by the pros, though, these are written and on-line materials. The other source of information you should check out will make Down syndrome real to you.

3. Talk to a parent raising a child with Down syndrome.

Weird, right? You just found out this test result. You don’t know which end is up. You’re not in a very happy place. And, you’re now supposed to call up a complete stranger so you can then sit down and talk to someone you don’t know about what it’s like raising a kid with a condition you don’t know much about. Sure. That’s not awkward at all.

I know that it is. I had the same hesitancy. We got our local group’s contact information and I remember thinking, “Crap. They’re going to be like missionaries coming to share the wonderful world of Down syndrome with me.” I did not want to have that conversation. I’m glad I did, though.

Fortunately, groups throughout the country are not there to judge or to push an agenda. They’re there to share information and answer your questions. You can tell them whether you would like the representative to have their child present–some find that helpful, while others find that “too real.” I was glad the parent volunteer just brought pictures with her of her little girl. That’s where I was in my comfort level. But, it was incredibly helpful.

It’s one thing to read about Down syndrome. To find out the medical facts associated with the condition. To see photos glowing from the computer screen. But that’s not your situation.

Your situation isn’t on paper or on the internet. You’re living it. Talking to another parent living with a child with Down syndrome makes it real. And then you can decide how you’re going to deal with a situation that’s more real to you, with better information than you had.

This isn’t my recommendation, either. Contacting another parent is what is recommended by the NSGC; ACOG says such a meeting can be “very helpful;” and the American Academy of Pediatrics found that expectant parents can benefit from such a meeting. I know I did.

Meeting with Julie and hearing her talk about her daughter Jill is what got me out of the hole. For me, it was Julie showing me Jill hitting a ball off of a tee–something I did when I was Jill’s age in the photo as a kid. Simple things like that are what give you the real information. For others it’s seeing a kid riding a bicycle. For you, it will likely be something else.

But, rather than go off and decide on what you’re going to do now that you know prenatally, make Down syndrome real to yourself based on accurate information. Then, you can decide what you’re going to do in less than a state of shock and based on better information than just the test result itself.

Local groups can be found through the national Down syndrome organizations, Down Syndrome Affiliates in Action (a trade organization for local groups), and usually by Googling “Down syndrome and [your town].” As I say in the video on BrighterTomrorows, you should feel free to contact me as well at mleach[at]downsyndromeprenataltesting[dot]com. Also, feel free to check out the D.A.D.S. website, which is for the international group “Dads Appreciating Down Syndrome.” 

If you are a father who received a prenatal test result for Down syndrome, what did you find helpful while you were processing the news?