13 December 2014
"I'm Sorry That Your Baby Has Down Syndrome"
You've just received a pre-natal diagnosis. Your doctor tells you that your unborn baby has Down syndrome. The doctor says "I'm sorry" and sends you on your way with some statistics and a pamphlet. Your head is spinning. Your hopes and dreams just came to a halt. Your heart hurts. You are desperate to hear the words "it will be ok."
You don't know where to go or what to do. You don't think that you can do this, you couldn't possibly raise a child with special needs. You aren't strong enough. You weren't meant to be in this position. You aren't too sure where you went wrong. You cry, you cry so hard and you feel sorry for yourself. How do you tell your friends and family? Will they judge you? Will they accept your child?
You go home with your husband, you read the pamphlet, it looks grim. How could you possibly move forward?
You've just received a pre-natal diagnosis. Your doctor tells you that your unborn baby has Down syndrome. The doctor says "congratulations to you and your husband. I understand that this is difficult news and you are probably feeling overwhelmed. I am here to support you and answer your questions. It will be ok."
Your doctor provides you with some community supports and some resources that will help you on your journey. An appointment is set up for you to meet with a genetics' counsellor. You have been given contact information for your local Down syndrome association. You feel overwhelmed but you also feel supported and cared for. Maybe you can do this. Maybe you and your husband can embark on this journey with confidence and positivity.
You cry because you are scared but your doctor just reassured you that it will be ok.
You go home with your husband, you look through all of the supports that are available to you and your family, you feel reassured. You can move forward.
These are the two scenarios. There are two outcomes which are very different. We move forward. We don't move forward. There is not enough education out there. There is not enough support from medical professionals. There is not enough care and compassion for parents who receive a pre-natal diagnosis. Those first words can change the future for this family. Things need to change.
You are ready for the arrival of your baby. Your beautiful miracle is welcomed into the world by the doctors and nurses. You hear the words "I'm so sorry, but your baby has Down syndrome."
There must be a mistake. There were no markers. There were no issues. You had a perfect pregnancy. Why didn't they detect this, this is their fault. You tell the doctors to take your baby away. You are not equipped mentally to deal with this right now. You cry. You know that this was not supposed to happen. There is nobody there to support you or to provide words of comfort and encouragement. The doctors leave the room and you are left to drown in your own misery. There is one nurse who holds your hand, she tries to comfort you, but you are too upset to listen to her words. They are meaningless.
You are ready for the arrival of your baby. Your beautiful miracle is welcomed into the world by the doctors and nurses. You hear the words "congratulations, look at your beautiful and perfect baby. We have carefully checked her over and have come to the conclusion that she has Down syndrome. I understand that you are feeling overwhelmed right now, can we offer you some support? Would you like to meet with the social work department? With a pastor? Please let us know what we can do to help you and your husband." The nurse holds your hand and shares words of encouragement and support. You feel overwhelmed but you also feel hopeful. The doctor smiled when you were handed your baby. I'm sure that we will be ok.
In the past year, I have heard too many negative stories from new moms. The way that the news is shared with families influences the decisions that they are going to make regarding their unborn baby. The way you welcome this baby into the world, this is what the family is going to remember for a lifetime.
There needs to be more education. There needs to be more compassion. Doctors and nurses need to be properly trained on how to deliver the news.
The phone rang, I was told that we had a 1:2 chance that our unborn baby would have Down syndrome. I was left crying. She filled my head with test options and then said goodbye. The news came as a shock and was delivered in a way that was unprofessional and upsetting to myself and our family. We didn't think that we could move forward.
When we received the news from my OB that our baby had Down syndrome, she talked us through it. She held our hand. She cried with us. She understood and gave us guidance. When we met with the doctors at The Foothills Hospital, we never heard the words, "I'm so sorry."
We were told the facts and we received the care that we deserved. We knew that we could move forward.
The world needs to change. The termination rate is high.
More women aborting & continuing Down syndrome pregnancies
This is an interesting article. Take the time to read it.