Skip to main content

Dear Medical Professional

Many parents have had bad experiences when they learned of their child's diagnosis. DSDN is running a campaign this month with #deardoctor letters. I encourage everyone to go and like their page. (This is the organization that has the amazing rockin mom groups). The following is my letter to medical professionals.


Dear medical professional,

I am writing to share my diagnosis story with you. Each parent has their diagnosis story, the time in which Down syndrome became a part of their family, but I have never really discussed mine. Unlike so many fellow parents, I haven’t written to a doctor about our diagnosis story. Many parents have chosen to write either to thank them for the way in which they shared the diagnosis, or has is often told, families writing and asking their doctors to reexamine the manner in which they share this type of news to other families in the future. The reason I haven’t written before is because my diagnosis story wasn’t much of one and didn’t fit neatly into either one of those categories.  

My story is a little bit different than most as mine took place after my son was born. Two days after my son’s premature birth, I joined my son’s neonatologist on the couch in his NICU room and listened as she gave a report on his health. It had been a whirlwind 48 hours with him arriving 12 weeks before his due date, weighing 2lb 2oz, housed in the NICU, connected to monitors and machines, and having a heart defect. While that is a lot to take in in a 48 hour window, he had been holding stable, so I was managing to hold myself together as well. While sitting on the couch hearing her run through his medial information she threw it out there in between information on his blood sugar and blood pressure numbers. In between all of his numbers and information she said “the results came back and he tested positive for Trisomy 21” and kept right with giving the rest of the report.

For a while I hated how she just threw it out there while I sat in his NICU room by myself. While I will gladly share just how much I love my son and how much he completes our family, this is not news parents are typically anxious to receive. Now looking back at that time, I’m not exactly sure what I would have wanted. I remember feeling as if her announcement did not match up to the major life altering news that she delivered. Now I’m not sure what I was expecting, did I want a drum roll or dramatic movie music? Now a year removed I am very appreciative of her approach. In telling me the way she did she showed me just where she ranked this diagnosis; right there between his all of his other medical notes. It is part of his medical file and not who he is. She did not follow up the statement with an apology or pity. She didn’t pause and say, “I’m sorry to tell you but…” She simply threw it out there between his blood sugar and blood pressure.

In fact only when she saw the quiet tears streaming down my face did she pause and ask what was wrong. I explained how it was a shock to hear this news thrown in the middle of his usual health update and how it was a lot to process. While in reality at that moment I wanted to tell her how she with that statement shifted my world. I then proceeded to say to myself as much as her, “now what?” To which she looked at me as if she was having a hard time understanding my concern and said “we treat him just like any other baby.” Her answer spoke volumes. In her way she was also saying, we love him just like any other baby, and I watched her do just that as she came into his room each time.

While I struggled to wrap my head around this new life that was to be ours she set the stage. The neonatologist’s statement of, “we treat him just like any other baby,” often goes through my head. She taught me so many lessons with those eight words. She taught me acceptance. She taught me to look beyond this note in his medical file. She also taught me to advocate for my son as she was doing while I, his mother, worked to process the news.

So medical professional, whether you are a genetic counselor, an OB-GYN, neonatologist, or other professional who might give this type of news to a family, I hope you understand the role you will now play in their family story. They might not ever remember your name, but I promise they will remember in great detail what you say and how you respond. Whether this news is given as a prenatal diagnosis or birth diagnosis, this news will be a lot to process. Please understand the significance of your role and that you are setting the stage. I would encourage you to remember the neonatologist’s words to me; “We treat him just like any other baby.” That baby lovingly tucked in their mother’s womb is just like any other baby. That baby is still a miracle just like any other baby. That mother has had hopes and dreams for that baby since two lines first appeared on the pregnancy test just like any other baby. 

I ask that you please treat this news with the kindness, assurance, and hope that would be afforded to mothers, just like any other baby.  My son’s diagnosis came in-between blood sugar and blood pressure numbers and that is where it fits; as part of his story and not his whole story. He has a quite a story. One that is filled with love, laughter, and hope; just like any other baby.

Sincerely,

Amanda 

Comments

Post a Comment

Popular posts from this blog

My letter to Alex Gordon

Alex, I wanted to share a few pictures with you that show why I'm writing to thank you. You see my three year old, Kaden, knows more about baseball and the Royals than many adults I know. He loves as he would put it "all of the Royals" but without a doubt, without any hesitation when asked who is his favorite player is his answer is always one player; you.  I'm not kidding when I say Gordo was one of his first words. In fact anything baseball for the longest time was called Gordo. I'm not exactly sure why he took such a liking to you. I joke it's because his first ever game at the K and you hit a grand slam when he was not even a year old. For what ever reason he adores you. He even has a little Gordo plush doll that he likes to take everywhere.  This past year has been the toughest year for our family. Our second son, Kaleb, was born 12 weeks early at 2lb 2oz. We also learned of his diagnosis of Down syndrome two days after his birth. He spent...
5 comments
Read more

Home

Sitting here in Kaleb's nursery rocking him I look around his room and think about how many people have contributed to his room. How incredibly loved he is. I look at the decals I searched for and then put up with the help of his daddy. The chair I am sitting in given to us by Heather who sometime soon I will trust to oversee his care during the day. The little bear on the nightstand that Haley helped me pick out for him before we left the NICU. On the bookshelf sits the Curious George from Nana. I also see the Panda bear from Rance, Jessica, and Heath.  Baskets purchased while shopping with Courtney. Even the cart that his Grammy and Gramps found so that we could put all of his medical equipment on so that we could wheel it around the house. Everything in his room all the way down to the baseboards and doors finished by Daddy and Dalton were a work of love as we prepared the room for our little K2. The NICU family print that will soon be on the wall above his dresser, signed by th...
3 comments
Read more

Extra Chromosome and All

When I began my blog I admitted that while people were often commenting on my positive outlook I am not always sailing through on a cloud of positivity. I struggle, I have days where the reality of the past five months sets in or the uncertainty of the future can seem daunting. I told myself that if I were going to write about our journey that I would be open and honest, and that includes the hard moments. The moments, days, or weeks when the emotions hit. Some might wonder why I would write and share those moments with people. Why I would open myself up to that level of vulnerability, especially when those who know me know how I value my independence and strength. In those first few days after Kaleb was born and we had received the diagnosis of Down syndrome I had many emotions that I was ashamed of feeling. “What loving person would ever have these feelings?” would often go through my head and result in me feeling even worse. They were feelings that I could not even bring myself t...
1 comment
Read more