I wrote this letter as part of Down Syndrome Diagnosis Network's Dear Doctor campaign, where mothers write a letter to the medical professional who delivered the diagnosis of Down syndrome. The letter is featured today on DSDN's website at the link below.
Dear Doctor,
I do not remember
your name, but I will never forget your first words to me. I had just
given birth to our first child, a beautiful baby boy, who had arrived four
weeks early. His surprise arrival is actually the only reason why you and your
neonatology team were in the delivery room. I had had a healthy pregnancy and a
negative Noninvasive Prenatal Test (NIPT), so I think we were all expecting a
fairly uneventful birth.
Minutes after
Jackson was born and before my husband or I even had a chance to hold him, you
turned to my OB and asked her a question. She was still working on me at this
time, and I recall you saying something about Trisomy 21. She responded with
"They had a negative test." I am not sure if you thought I could not
hear you or if you thought the epidural had made me too loopy to understand or
if you thought maybe, as a 37-year-old first-time mother, I would not know what
Trisomy 21 was, but I assure you- none of the above were true. I quickly
jumped into the conversation, adamantly repeating what my doctor had said to
you.
This is when you
turned to me and said, "I hope I am wrong, but your son is exhibiting
several markers for Trisomy 21 or Down syndrome."
I doubt you knew
the power you wielded at that moment or how those words will forever be etched
into my memory. If you had known, I have to believe you would have chosen to
handle this moment differently. In fact, because how a doctor delivers a
diagnosis of Down syndrome has such a lasting impact on parents, the American Academy of
Pediatrics Journal actually has recommendations for delivering a
birth diagnosis to parents.
One
of these recommendations states how parents should be told together and should
have had time to meet their child. Though four weeks early, our son was
not in any immediate distress; you easily had the time to make your
observations silently, swaddle him, return him to us, and then privately
discuss your suspicions with my OB.
Instead,
by sharing your observations in the way you did, you robbed us of something we
can never get back. We will never have that moment where we looked at our son
with the pure amazement all new parents should have the opportunity to
feel. Instead, the first time I held my son swaddled in that pink and
blue hospital blanket, I was searching his face for the
"markers" you mentioned. Instead of basking in his beauty (because he
is beautiful) and feeling my heart fill with the kind of unimaginable love only
new parents understand, I felt a cold, dark fear take residence in my
heart.
Part
of this fear came from my lack of knowledge about Down syndrome, something with
which I had had little experience. However, your words also contributed to the
despair I felt. By saying you hoped you were wrong, you told me that whatever
you said next was something negative, something undesirable. Another
recommendation from the American Academy of Pediatrics asks that doctors
use positive language and refrain from offering opinions about the
diagnosis. Yes, a diagnosis of Down syndrome is life-changing, but your words
made my husband and me feel like those changes would all be negative. Your
words did not tell us that my baby was still perfect. Your words did not
reassure us that our baby deserved to be here.
Thankfully,
I had family members and friends who quickly connected me to other mothers on
this same journey. Their words of congratulations reminded me that our son
was still the baby who had grown inside me for almost nine months, still a baby
worthy of celebration. Their words of encouragement motivated me to learn
about all the amazing things our son will be capable of doing. His diagnosis
and how we initially received it will not define him.
In
writing this letter, I hope that your approach to future diagnoses changes so
that it allows families to have that moment of unabashed joy when holding their
newborn child for the first time. Please, choose your words and timing
carefully. You have more power than you realize.
Link to letter on DSDN website:http://www.dsdiagnosisnetwork.org/single-post/2016/10/04/Dear-Doctor-You-Robbed-Us-Of-Something-We-Will-Never-Get-Back
You,
too, can let
your doctor know how they did delivering the diagnosis by participating in
DSDN’s Physician Feedback program. Your submission will be kept
anonymous. http://www.dsdiagnosisnetwork.org/#!feedback/c1gzt
Connect
with the Down Syndrome Diagnosis Network if you have a young child or are
expecting a new little one with Down syndrome for information, connections, and
support. www.dsdiagnosisnetwork.org
No comments:
Post a Comment