Topic: Discussing Options Copy
Note that the doctor understands that the couple may be overwhelmed at this point and unable to retain information from their conversation. He has a packet of information ready so that the couple can take it home and use it in decision-making.
Video Transcript
Dr. Thomas:
That is a question that only you and your husband can
answer. But before you make a decision, you need to take time to learn about
Down syndrome.
Mrs. Abbott:
(With pain and some embarrassment). I started to do some
research on Down syndrome after you gave us the odds at our last visit. I
started to read the information, but as I thought about my own baby, I just
couldn’t read it.
Dr. Thomas:
(Supportively) Perhaps I can help here. First, I would like
to give you a packet that describes each of your options. This packet also
contains literature from the local Down Syndrome Association. If you would
like, they can talk with you and help you understand some of the things you
might be feeling. Along with that information is a reading list of some very
good books on Down syndrome.
Mr. Abbott:
(Gratefully but hesitantly) Thank you doctor, we will look
at this. I guess I had hoped our child would grow up and someday own the
business my wife and I have started. I guess we can forget that now.
Dr. Thomas:
We have learned a great deal about Down syndrome in recent
years. First, children with Down syndrome are not all the same – they are as
unique as other children. It is impossible to predict the future of any child,
but our notions about what is possible are
changing.
Mr. Abbott:
(Somewhat skeptically) Yes, but what does that really mean?
Dr. Thomas:
(Reassuringly) Most children with Down syndrome follow
typical developmental stages, but they may do it a little more slowly. With
early intervention, they are learning in regular classrooms, developing
friendships with other children, and growing up to become productive adults. I
don’t want to minimize the problems that these children can face – and I am not
in your shoes, nor can I pretend to understand all that you are feeling right
now. I have a CD, Brighter Tomorrows,
that provides life glimpses of children and young adults with Down syndrome, as
well as stories from parents and important resources for families – I would be
glad to lend that CD to you.
Mr. Abbott:
(With some anguish) I am sure this information will be
helpful, and your support and knowledge means a lot to us. This is a very hard
decision for us. My wife and I have so much wanted this child, but I guess we
will have to decide whether we can raise a child with Down syndrome (turning to
his wife). Lois, I love you, and I know how hard this is for you. (And then
turning again to Dr. Abbott). I guess we have to let you know whether we are
going to keep this baby, or have an abortion. It is almost too painful to think
about.
Dr. Thomas:
I need to let you both know there is also a third option.
There is a waiting list of parents who specifically want children who have Down
syndrome. I’m sure that is surprising to many people, but it reflects all that
we have learned with medical advances and early intervention for children with
Down syndrome. I have included information about adoption in the packet as
well. Interestingly, about 50% of the parents who decide to go through with
their pregnancy and then ask about adoption possibilities, decide in the end to
keep their baby. There is a national organization devoted to connecting parents
interested in adoption.
Mr. Abbott:
(Looking surprised) That does surprise me. I guess it would
take a special person to adopt a child knowing that there were going to be
problems like this.
Dr. Thomas:
There certainly can be significant problems for these
children, Mr. Abbott, and we don’t always know these problems before they are
born. I cannot speak directly to how adoptive parents feel, but other parents
of children with Down syndrome report that their children often bring an added
dimension of love and acceptance to their family. I think that is part of it.
(Pausing) The other option is to terminate this pregnancy,
and if you make this decision, I can give you some information on that. Not all
couples feel that they can go through with a pregnancy under these conditions.
Mr. Abbott:
(With great ambivalence) Well, Dr. Thomas, abortion is
frowned on by our faith, but I cannot imagine the challenges of raising a child
with Down syndrome.
Dr. Thomas:
(Reassuringly) Your worries are understandable, and I cannot
make this decision for you – but I can help find the answers to your questions.
Talking with other parents of children with Down syndrome can be especially
helpful – the local Down syndrome association can put you in contact with
parents. They are the best experts about the rewards and challenges of raising
children with Down syndrome.
Mrs. Abbott:
(Politely) Thank you, doctor. I did check the website on Down syndrome – I know that these children are usually delayed. What are the chances of other health issues for our child?