Four simple words. Four simple words that hold great significance. Four words that will change a person's life and ultimately start a new story. This phrase does not hold any personal bias, assumptive future, or insensitive language. Just truth. "I have unexpected news."
Since last fall, I have had the unique opportunity to give our family's perspective on what it's like to receive a diagnosis of Down syndrome to numerous medical providers. The audience has included senior college nursing students, labor and delivery nurses, NICU nurses, numerous neonatal nurse practitioners, genetic counselors, and future physician assistants. Medical professionals that work and care for patients daily. These professionals will meet families and communicate with them an unexpected diagnosis of some sort or another. I am thankful that my calendar has been filled with presentations on how we can do this better.
After sharing Jack's birth story, I continue throughout my message giving examples of other ways families have received the unexpected news that their child has Down syndrome. Prenatally and postnatal. An extra chromosome makes an impact on a precious child, their parents, and their family. I do believe that how the news is delivered can make a huge impact on a family's ability to accept their new path. In any shocking, surprising, unexpected event, there can be a series of emotions to process it.
I explain that as I was preparing to speak to the nursing staff at the hospital where we delivered our sons, the tears began to come. Not because Jack has Down syndrome, but because of how we were told the diagnosis. My questions and grief came from the language used and the assumptive tone along with the experience that no support or resources were given. The tears also come in the reality that many new families find a bond in the commonality that most received the diagnosis in such a traumatic way. Yes, I realize it's a difficult conversation but how do we not have a 'plan' or protocol for handling unique situations like these? It's 2015. It's time for a change. We can do this better.
I meet families on a weekly basis, delivering a Jack's Basket to them, congratulating them on the birth of their child, and encouraging them with support and resources. I absolutely love it. I do not love when I continually hear that they were told the diagnosis in the following ways:
Me: So how did you hear that your son has Down syndrome?
Mom #1: Well, since my son is a multiple, the doctor came in and looked over the boys, then asked the nurse, "Which one do they think has Down syndrome?" That is how we found out our son has Down syndrome.
Me: So how did you find out that your daughter has Down syndrome?
Mom #2: Within seconds of my daughter entering the world, I remember a nurse practitioner yelling this baby has Down syndrome, get her to the NICU immediately. I did not get to hold her, see her or anything before they took her away.
An email I received:
Mom: Did you ever follow up with the nurse practitioner that gave you Jack's diagnosis? I am struggling with how we were told.
Me: We haven't, but have had the opportunity to speak with the nursing staff at the hospital he was delivered at. I have had time to process it and forgive her for it and move forward in a positive way. I know that if we would have not been told in this way, I possibly wouldn't be on a mission to change the way diagnosis is communicated. Tell me how you were told about your daughter's diagnosis?
Mom: My OB (who we didn't have the best relationship with) came in and picked my daughter off of my chest. I asked him what he was doing and he explained that the nurse suspected that their daughter had Down syndrome and so he was checking her over since the nurse practitioner didn't feel comfortable doing an assessment explaining she didn't have a relationship with us. He picked her up and said, "She might. The pediatrician doing rounds tomorrow can do an assessment on her." And then left only to discharge her a few days later not referencing anything about Down syndrome...and no support.
These are real families, real stories. Real feelings. Along with postnatal examples, I provide experiences that two moms had prenatally explaining that they were told if their child was born that they would not be able to bring their child in public for the first year, they couldn't be around other children and other frightening 'facts'. Assumptive information of what their life would look like if they continued the pregnancy because the child they are carrying has Down syndrome. One of the moms was highly pressured to terminate her pregnancy. I understand that providers are required and have the 'responsibility' to provide options for terminating the pregnancy but then I ask how often are families given resources for connecting new families with contact information of parents raising kids with Down syndrome (which I believe is the best resource)? Are both options given equally? Currently, both moms adore their daughters and so thankful for the precious child they gave birth to...along with leaving their houses...and being in public. ;)
While presenting at a breakfast to a group of business professionals, a person asked, "Well, if it's important for families to find out soon after birth, how do you suggest they are to be told?"
Personally, I have reflected on this question ALOT and I came up with this phrase... these four words. "I have unexpected news."
Along with that phrase, I believe it should be followed up with these considerations when delivering a diagnosis which includes research done by Dr. Brian Skotko on the best practice for delivering a diagnosis including the following:
1). Pediatrician or neonatologist should deliver news or share suspicions (with OB if possible).
2). News should be discussed when parents are together after they’ve had a chance to hold their baby.
3). Have conversation in private setting soon after diagnosis is suspected.
4). Provide accurate and up-to-date information including opportunities to connect with other families.
You can read the full article and publication here for a prenatal diagnosis and here for a postnatal diagnosis. The Down Syndrome Diagnosis Network provides brochures for medical providers and resources to give to new and expectant parents. (Also, recently DSDN has played a huge role in passing a law in Minnesota that requires medical providers to provide up-to-date information to new families that receive a diagnosis of Down syndrome. This is awesome news, but also bittersweet that a law like this needs to be in place for people to receive accurate information)
What if these four words were the start of their new journey?
What would be the tone of the conversation?
What if parents didn't have their story start with...
"I have bad news." or "I am sorry."
As a parent of a child with Down syndrome, when we hear the words "bad" or "sorry" we translate to mean...
My child is bad. My child is a mistake. You feel sorry for me. You have pity for me because of the way my child was uniquely created.
I know that might not be the intent of the comment, but I will tell you that when you bring your child home, discover the blessing they are, cuddle and breathe them in, watch them grow, celebrate each milestone accomplished on their timeline, and most importantly fall in love with them you get a chance to reflect on the first few moments, the words used, the way it was communicated, often times feelings of sadness or anger can rise in us as to how our child was presented. Not as a child but as a mistake.
I've said it before, and I'll say it again...I would not take Jack's extra chromosome away from him if I could. I encourage families to follow up with their doctor, nurses, pediatricians, etc., sharing how much their child means to them as many of these medical providers only see the first reaction to the unexpected news. Let's do this better, bridging the gap between the medical community and families loving their lives with children with Down syndrome. How can we expect them not to assume our lives are so dramatically different if all they see and hear are the tears at the very beginning?
In January I got the opportunity to speak at the March for Life Conference in Washington, D.C., and I listened as a mom shared how she had learned that her oldest child was diagnosed with Cystic Fibrosis. She said soon after it was discovered that her son has CF, a genetic counselor came in to her hospital room and started talking about birth control options as she explained it was important that this ''problem" didn't happen again. Her son was referred to as a problem.
In my blog post about speaking at the hospital where we delivered Jack, I talk about how there were significant people that made such a positive impact on our first few days after we received Jack's diagnosis. Along with our family and friends who immediately loved and supported us and we leaned on for strength...some were complete strangers. When we feared the world might not accept Jack for who he was, these nurses, my doctor, and Jack's pediatrician came into our hospital room and loved on us and most importantly loved on Jack. They had the choice to just do their job, communicating the facts about what the textbooks define Down syndrome to be and the implications on Jack's life. But they chose to look at Jack as a precious baby, a child to be celebrated, a miracle...as we all are...and they supported us on this new, unexpected path. To this day, I am grateful for the love that these people gave us and how they viewed Jack's life as a gift. A blessing.
Although at the time, these medical professionals weren't our family...but they have become our family. Adopted into our family as they play such a significant role in our story. I CAN NOT thank you enough and we are so grateful for each of you. Thank you for doing this better.