What did your doctors say when they delivered the diagnosis of Down syndrome?
I asked this question to a group of blogging moms. The responses were honest, real, and raw. A clear sign that we still have much educating to do within the medical community, and a reason that drives the IDSC to do what we do.
As part of our Real Families, Real Stories campaign, these words resonate close to the heart of the IDSC. These are real stories about real families, real words spoken to them as these women tried to make sense of their baby's diagnosis, either prenatally, or shortly after birth. Thankfully, not all responses were negative.
What did doctors say when they delivered the diagnosis? Here are their responses:
"Shall we go ahead and schedule a termination?" it's just the tip of what was said
to us - we also got the 'burden for life' thing and 'think of your other child'
and 'these people rarely do anything with themselves' and all that glorious
crap. It just went on and in and on. We chose her name very
specifically, very carefully...she earned it.
Meriah Nichols blogs at www.withalittlemoxie.com
"She is beautiful, and she is perfect and I'm quite certain that she has Down syndrome."
Melissa Skavlem
"You
know about the Downs, right?"
Deborah Tomai blogs at www.whatateam.blogspot.com
"Wyatt is still Wyatt"
Deanne Frere
"Do
you know what Down syndrome is?"
Johanna Hirons blogs at www.celebratingphoenix.blogspot.ca
"My
husband was told by the pediatrician from our office that 'we were crazy our
daughter was perfect' ALL staff from the hospital ignored our concerns. We had
to bring a 4 day old back to the hospital to their regular lab for a blood
test. They did not even have supplies to draw a newborns blood when we arrived."
Cynthia Bryl blogs at www.brylfamily5.blogspot.com
""Well, I know it's not the news
you were expecting, but the baby has Trisomy 21. I'll call back tomorrow with
information on the Down syndrome group and to tell you how to schedule the
fetal echo... For now, talk to your husband, and cling to each other." About a year ago, I sent a thank you
note to our genetic counselor. Our ob was great, too. I should also add
that my OB connected me to another patient who had a little girl with
Ds. The patient brought the book Gifts, a note, and her
number to the office to leave for me if I'd take it from the OB! Of
course I
did!"
Megan Landmeier blogs at www.mystubbornmiss.com
"Our doctor just about cried telling
us...and then followed it up with, "There are lots of people out there
that like to adopt 'those babies' if you don't want to do this after
all..." Even then, I remember thinking..."uh. wow. no. she's
MINE." On the other hand, my
nurse told me that she was beautiful and had somebody from the local DS group
there within the day after I said that I was interested! She was such a
blessing...I tried to track her down...no luck, but I like to think she was our
very own angel!"
Tiffany Underwood
"Our
doctor said, "I'm not going to tell you sorry. There is nothing to be
sorry about. The baby does show signs of having Down syndrome. Let's
talk." He got a thank you note."
Carolyn Montonati blogs at carolynm516.worpress.com
"I remember when they plopped Ava up on my belly,
I first looked at her hands to see if she had all the lines and she did. They
took her aside to evaluate her and I kept asking if she was ok. When they
brought her back and laid her in my arms all I could see was this beautiful amazing
little creature. Then the Dr. cleared the room and said, "I'm so sorry but
I do believe your daughter has Down Syndrome". He was very kind but I
really wish he would have left off the "I'm so sorry" part and added
on "congratulations you are in for an amazing journey"!"
Greta Johnson
"After
the MF specialist told me the amnio came back positive he assured me that it's
okay because Sarah Palin has a baby with Ds, to which I responded "But I
don't like Sarah Palin" he then didn't know what to do with us and handed
us off to a geneticist."
Holly Waligora
"The pediatrician said almost nothing. My OB was an
absolute blessing. She said Danielle would get through the gates of heaven. She
said she'd get me there too. She said Danielle would be strong for me and she'd
make me stronger too. She cried tears
of joy for us. She said we had been very blessed. I could see that she was
genuinely happy for us. None of it really made sense to me at the time, but now
just over a year later I totally "get it." I'm so thankful for her. I
think she helped to shape my view and started me off on the road to acceptance."
Tiffany Alfonso blogs at www.alfonsofamilia.blogspot.com
"The neonatologist said that she was on oxygen
because her lungs were not fully developed and that she had physical
characteristics that led him to believe she had Down syndrome. He was very
monotone...with no emotion but that part was okay because I had
enough emotion for everyone. He was very positive with every concern we had
about Ds. The OB that delivered her the next day was very flip, "it could
be worse." That bothered me more than anything because she was rude the
entire day before and gave me no validation for my feelings. I
asked the neonatologist what do we do. How do we care for her? His
response, "Take her home, love her, feed her. She is your baby first.
Take everything else as it comes." That is the best advice I was given.
The NICU nurses and the neonatologists were fabulous. The nurses on
the floor where I was were horrible. They didn't even mention my
daughter's name. It was as if I never had a baby to them. It still
bothers me the way they "skated" around the topic. "
Michelle Arthur blogs at www.thehaileyherald.blogspot.com
"The
geneticist called my husband who called me w/the amino confirmation but the
only MD that really talked to me about it was the cardio. He said,
"they've completely revamped the way they teach these kids and she'll be
more productive than half the population". He was completely relaxed &
upbeat. It was tremendously comforting."
Kate blogs at www.krlr-trialrun.blogspot.com
"We were told adoption was an option for
our 10 minute old baby boy...then we kicked the pediatrician out of the
delivery room. When our 2nd son was born (who is typically achieving) I asked
to have a Ds blood test run just to ease my mind, the pediatrician in the
delivery room said I was "irresponsible" for not having genetic
testing done in utero...we kicked that pediatrician out, too."
Tracy Churchman blogs at www.tysadventures.com
In our case Nava was 9 days old when they told us
(day one they said they wanted to rule something chromosomal out just in case
and did blood test. it was so off hand i didn't think about it again). I walked
in and mentioned that her weight was up and the
first words out of his mouth were I'm Sorry she has Down
syndrome....blur...they are very loving and affectionate...blur. I was
completely shocked and knew nothing about DS. I had to ask if it was terminal.
Then he told me to come back in 6 months and the nurse came to take me to my
lactation counselor appointment.
Kelly Khamphouxay blogs at www.navagating.com
"We didn't really get a definitive comment from
our doctor. We noticed first, then my husband cornered the L&D nurse in the
hallway and asked her point blank if she thought Samantha had Ds, and she said
yes. Once it was known that we knew, everyone was
great. Lots of support and congratulations, and visits from geneticists,
cardiologists and, most importantly (to me at the time), a social worker with a
folder full of resource material."
Rebecca Bates blogs at www.thebatesmotel3.blogspot.com
"While
waiting for the amnio results, my doctor said "Let's just hope it's
anything BUT Down syndrome". And then when the genetics counselor called
to give us the positive diagnosis, He kept saying "I'm so sorry" in
the same tone of voice you would tell someone about a death in the family."
Deanna Smith blogs at www.deannajsmith.com
"The doctor had no idea...or didn't want to tell us. I figured it out."
Gary Bender
"It would have been nice IF an actual doctor had given me the news. Instead I received a phone call. I answered and a woman with a bubbly voice said, "Yes, this is Megan from Dr. So and So's office." (No other identification, other than her name was "Megan". I thought my test came back negative for Ds because she was so bubbly.) She continued (still bubbly), we got the results from your amnio back and... Unfortunately, your baby does have Down syndrome. (Silence on my end...) So...(still bubbly) do you have any questions? Or would you like to come into the office? I simply said, "I'm gonna have to call you back. I think I need to talk to my family." And I NEVER called back. I changed doctors immediately and didn't look back. Even our new doctor, who was mostly amazing, was sure to let us know that we could have a late term abortion because it is a Down syndrome diagnosis. We couldn't cut him off fast enough by saying that we were NOT terminating, and he said, "Okay. It's just part of my job to have to give you that information.""
Jennifer Currier blogs at www.meandmyboysblog.blogspot.com
rss
twitter
pinterest
facebook
5 comments:
We did not know prenatally. He was also born with cleft lip and palate, so they told us they thought he had trisomy 13, which is "incompatible with life" and that he probably would not live very long. Several days later we got a call from the neonatologist with the results of the karotype. He just stated that he actually had trisomy 21; Down syndrome. We were very upset, but also very relieved. Christine Izzo
We were told that they baby A, we had twins, had features of Down syndrome. Then she went on to describe the features they were seeing. It was a very non-judgmental matter of fact way of telling us. While we were surprised, it was as genle and caring a way for them to tell us. It was followed up by a resident coming back in to see if we had any questions after we'd had a while to process the information. We were then provided a book and ongoing support while the babies were in the NICU from the doctor's there and given information about a Down syndrome clinic. It was appreciated.
2nd quick story: My OB didn't say anything on my next visit (post dx) but the nurse ran & got me a Xmas card from one of their other patients - a boy w/Ds & his sister, snuggling - she sd she only knows this one other family but aren't they adorable? They were, of course. THAT was supportive & is why I send Xmas cards to our med providers.
After prenatal diagnosis of heart defects and of the possibility of DS we decided to have the amnio. The day we found out, I spent the day in the hospital because his heart rate was low. The OB said a Dr. from Charleston would call me that night but didn't give us the news. I was exhausted emotionally and physically when the genetic counselor, Karen, called at 7:30 pm to say our son has DS. I was overwhelmed and gave the phone to my husband. Karen said she would give us time to digest the news. She called back at 9:00 pm to check on us and to answer our questions. We made an appointment to see her and were blessed to find a compassionate person. Karen explained DS, excitedly gave us Landon's Karyotype (Which we treasure), and a packet with a wealth of information including support groups. Our favorite thing in the packet was a bumper sticker that read, "I Love Someone with Down Syndrome". We never heard the word "termination" or "adoption" or "I'm Sorry". I know how blessed we were to have Karen as our informant.
A pediatrician I had never seen before came into my hospital room the day after my son was born. It was a little before 7:00 a.m. and I was by myself. He woke me up and told me my son showed signs of Ds. He was in and out in five minutes. He later confirmed the diagnosis after genetic testing had been completed. When my husband and I inquired about a referral to a cardiologist to check for heart defects, he informed us that if we noticed our son turning blue we should let him know. Otherwise, we could wait until he was six months old and went to the Ds clinic at the local Medical University. We switched pediatrician offices and were at a pediatric cardiologist the following week.
Post a Comment