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."
"You know about the Downs, right?"
Deborah Tomai blogs at www.whatateam.blogspot.com
"Wyatt is still Wyatt"
"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!"
"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"!"
"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."
"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."
"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