Downs Syndrome Sensitivity Training?

Question

I am trying to find out if there is sensitivity training for nurses and Dr.s who deliver babies with Down Syndrome or other obviouse special needs. Is there something for the nurses who work with the babies and their families before they are discharged from the hospital after birth? At my local hospital where my son was born, the nurses and Dr's clearly had know idea how to act. They were not mean or rude, they just basically said nothing. Would'nt even look us in the eyes. I don't blame them . They did not know what we were going through and if they have never had training, how would they?

Answer 1

Very good question. We were lucky to have a great team of people when my son was born with Down syndrome. With only one exception (a rather thoughtless Radiologist) we got positive responses. Some hospitals, such as Seattle's Childrens' Hospital have programs that require their residents to spend time with a family of a child with Developmental Disabilities. Families volunteer and the resident comes to their home and spends a day or so just doing the family's usual routine which may include therapy, school, church, etc.) It allows the new doctor to see our kids as a person and just what they are capable of...and to see how we as families love and accept our children. Hopefully giving them more insight as to how to handle this in the future. The website for the Seattle program is:

http://www.cshcn.org/projects/familiesasteachers.cfm

Also, more and more Down syndrome Clinics are starting to pop up around the country offering specialized care for families with an angel!!

You might want to contact some of these programs and put your local hospital in touch with them to see if they can start a pilot program!

Good luck!

Answer 2

I would report what happened to you to the hospital where your baby was born. Because if no one complains, they have no reason to change.
I worked in a hospital for three years and I did see nurses with a lot of compassion and support for families whose children were born with special needs. But I am sure that every hospital is not like that.
You could also talk to your local Parent to Parent group and ask them if they do such training or report incidences of staff not being sensitive.

Answer 3

I am so sorry you had to go through that! my youngest has down syndrome and I knew when I was 5 months pregnant. I had the most wonderful team of doctors and nurses from Freodert Hospital in wisconsin. and at children's hospital in milwaukee when he had to have open heart surgery at 4 months.
by the time he was born I knew so much about what to expect and what special needs he would have that it wasn't as frightening to me.
they even contacted the county that I live to let them know that I was having a special needs baby so when he came home he would be in the birth to 3 program and receive PT, OT, speech and special ed.
some people would say "I am so sorry" and that would just plain ol' pi** me off! I would think...sorry for what? I have a beautiful little boy...sure he does things at a slower pace, but he does it and I am proud of him in every way!!! Be Proud of your son, he is special even when he figures out how to climb on the counters and take out all of your stuff out of the cabinets!..lol

Answer 4

I don't know if there is but there should be. When i was pregnant i was told my baby had a heart problem and i had to go to the city to see the doctor the rest of my prgenacy. So i did, we learned more about what was wrong and one vist they told us there is a good chance the baby could have downs syndrome. We said ok we asked why. Not much to say but it had to do with her heart. They were pushing us to have the tests done to see if that was the case. We did not want to have it done because we were not going to terimnate the pregnancy because of that. We said if she dose we will deal with it at that time. They would never understand or respect our wishes to drop the subject. They kept bothering us. It was very upsetting that they had no feelings toward how we felt. It was hard enough knowing that our baby girl had to stay in the hospital until she was strong enough to have open heart surgey. This was all before she was born. I guess they think they have to feel bad for us and that makes it hard for them to talk to us (you) about it. They had trouble dealing with us because of the heart problem my baby had. They did not know how to act or what to say. I am so sorry about your son, but keep you head up and help himas much as you and you will be supprised about just how much he will be able to do. I have seen a lady i am friends with raise her little girl who had downs and she is doing great. Best of luck to you, you are very luck parents. And don't worry about what other people say or think. You and your family will be fine, you are blessed with son. I say this because i lost my baby, she passed after her surgey. Turst me you are blessed.

Answer 5

I am sorry for your plight - raising a child with special needs is not easy and it is devistating news to hear - and to deliver for that matter. I suppose that there is sensitivity training out there, the key is getting people to attend and apply what they learn.
As a parent of a child you could, with the help of local support groups, develop your own sensitivity training program and educate the dr's and nurses as to what would be comforting to hear without raising false hope. Also what is insensitive to hear or be told.

Answer 6

Not sure, but my daughter has severe brain damage/CP and has a trach and ventilator, every time we go in the hospital for something no one knows how to act. Some of our home health nurses have had training like that and they STILL dont know how to act, or treat her. Its very sad.