Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Wednesday, September 3, 2014

Why information matters

Have you ever woken up and been SURE that something had happened?

That is precisely what happened the other morning.  In fact, I was so sure that I spent a great deal of time searching the internet for a trace of what I remembered when nothing showed on my trusty newsfeed. But all search attempts found not a single hit for the story racing through my mind.
The story I was seeking out?   

“New mother delivers one-two punch to doctor after delivery” 
A woman, alone in a hospital bed snuggling her newborn baby hours after delivery, punched her doctor. Twice.  Calmly. Whole-heartedly punched the doctor. Why you may wonder?  As she stared at her first-born child she had just welcomed into the world, and long before into her heart, the doctor broke the news, “We believe your baby has Down syndrome.”  There was mention of blood tests to confirm the suspicion.  There was a nearly illegible handout on the Facts Of Down Syndrome with a copyright date in the previous century. There was a sermon on the challenges, medical and social, that are sure to lie ahead for baby and the family.  There was the customary apology. All it took was the final statement of “I’m sorry we didn’t know about this sooner” for the fists to fly.  

It also could have gone something like this….

A seasoned mom lays on a surgical table and hears the soft cries of her newborn child. She notes the unusual quiet in the background as the medical team tends to her and the baby.  Her husband notices looks of uneasiness around the room and the couple exchange glances preparing to hear the worst possible news.  The doctor turns to the parents while stitching her abdomen back together and mentions that they believe the baby should have a karotype completed; they think the baby might have Down syndrome. The surgery is completed and the mom is wheeled into recovery.  Pumped full of pain medication, experiencing the postpartum power of emotions and hormones and without her precious baby, she begins to process the doctor’s words.  (In this scenario, I imagine dad was the one that let loose)

Or this…

Parents give  snuggles and kisses and then watch as their newborn is taken to the Neonatal Intensive Care Unit just after meeting their baby. They take a moment to themselves and embrace while preparing for what comes next; they’ve known for weeks that this baby would have Trisomy 21.  A support staff member enters the room and gives a sideways nod while offering condolences, “I’m sorry they believe the baby has Down syndrome.  I know that sometimes these little ones don’t walk or talk. I think there are places where you can place her so you don’t have to be burdened.”  The mother replied, “That won’t be necessary. We have a terrific support team in place to help guide us and support our child.”  And then they kicked that staffer right out of the room. Literally.

Would you blame these parents? 

Although I would never condone violence, it doesn’t take a large stretch of the imagination to begin to see how these scenarios could end this way.  Imagine receiving what you believe to be life-altering information in any of these situations.  Now understand this….It happens often. In this decade, year, week. Parents are broad-sided with this diagnosis and, more often than not, left to find their way. Whether it be due to a lack of understanding about Down syndrome on the part of the physician, a newly-minted medical professional delivering the news for the first time or just someone who really has received no training or information otherwise- it happens too often.  

I get the lack of understanding on the part of the general public.  Heck, I was someone that knew little to no information about DS before entering this adventure. But I am not a medical professional.  I am disappointed each time I hear stories of how the diagnosis was delivered.  Sometimes I am nauseous.  To know how vulnerable and emotionally-charged that moment can be and hear words that are handed out seem unbelievable.  In fact, the stories above may not be ripped from headlines today, but they are each parts of stories that real families have experienced.

I can begin to theorize why this sometimes happens in the medical community…

  •   Delivering a diagnosis does not happen often for each doctor ---- Some may only have a patient or two, ever.   Few, if any, have received training on how to handle the conversation
  • It can be a medical concern --- It is also a baby, but first it may be viewed as a medical concern. Some medical staff may feel it is their duty to give the diagnosis and it is someone else’s duty to pick up the pieces.
  • Lack of experience with an understanding of Down syndrome, in general ----This is not a widely-studied area in medical training.  Often it is a slide of information explaining the condition and possible related medical issues. Background knowledge and personal beliefs also play a role in how doctors perceive the diagnosis

How can we make this better for parents and medical professionals?   

  1.  Access to information about what is the reality for a Down syndrome diagnosis in 2014.
  2.  Access to medically-supported materials that assist physicians in delivering a diagnosis.
  3. Resources for new and expectant families in the form of experienced parents of children with T21.

What would be ideal for a parent to hear?
  •   “Congratulations!" They did just welcome a new life into the world and that baby should be celebrated the same as any other.
  • “Here are some resources in the area for you to connect to.”  There are incredible local organizations doing amazing things for families new to the DS club. Medical teams do not need to have all the answers, just the right resources to direct a family to. 
  •  “Here is some information to read or look at when you are ready.”  Books like Unexpected , Gifts, and Babies with Down Syndrome, along with resources from national DS organizations, can be very helpful in the first months, but maybe not that first day or night.  Getting these into a parent’s hands for when the time is right can be critical in helping parents move forward. There are many resources out there that organizations are happy to share.
  •  “Would you like to talk with a parent of a child with DS?”  Some parents may be interested, but others may not. Giving the option and have resources available should be a standard practice. 
  • "Try to stay away from the internet and focus on the new baby in front of you." Although some parents will want to devour information and learn as much a possible about what may be in store, it wouldn't hurt for them to know there will be plenty of time for that in the years to come.  This time will pass quickly and they do not want to miss it all.
Hearing diagnosis stories from hundreds of families over the past years and compiling Unexpected led to the creation of Down Syndrome Diagnosis Network (DSDN).  I've heard diagnosis stories ranging  from incredibly supportive to terribly discouraging. The positive stories give us so much hope that supporting physicians will help them support new families. We aim to get parents connected and support families as they join the T21 community.  We believe making connections with medical professionals will have an enormous impact on the conversations yet to come with parents.  By providing support to the physicians supporting parents, we can make a difference!

What was your diagnosis conversation like?  Join in the conversation and follow us on Facebook at Down Syndrome Diagnosis Network.  Our goal is bridge the gaps so that parents receive accurate, up-to-date information upon hearing a diagnosis.