What a great opportunity you were given, and you hit a home run.

Delivering this news must be one of the worst things an OB/GYN has to do. I wonder whether videos could be prepared (one for pre-screening, and one for a negative screening result) giving the bright side of having a child with DS, or at least both sides. Doctors might be delighted to be off the hook.

Finally, as a graduate of two Ivy League institutions, I am afraid that your dinner partner’s pronouncements reflect an ethical absurdism that is accepted at elite universities. But I believe you misinterpreted his foolish grin. Even he must have recognized that he had just stepped in it. Furthermore, he probably feared talking to someone who just might demolish his precious theories.

Keep up the good work!!

Like you, I believe American women and families are being shortchanged without realizing it. We think our freedom of choice is being enhanced by prenatal testing, but given the current clinical climate, it’s actually being hampered. Parents of an unborn child with DS get a lot of information about what might go wrong, but they also deserve to know what might go *right*. How can parents make the best decision for their family if they have incomplete information?

Last month, two adults with Down syndrome representing the National Down Syndrome Congress distributed 300 copies of GIFTS: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives to physicians attending the annual conference of the National Society of Genetic Counselors. As editor of GIFTS, I can only hope that these doctors read the book and take its message to heart: that the life of a child with Down syndrome is something to celebrate.

Thank you, thank you for speaking up in such articulate, sensible, and poignant terms.

She is three and a half years old now, is in preschool, knows her colors, can say some of her A-B-C’s and has an ASL sign list of about 50 words. Should I have terminated her upon hearing that she had a heart defect and Down syndrome? Did I destroy her life by bringing her into this world?? NO, NO, and NO!! She is the sunshine of my day, and a joy to everyone that she comes in contact with. I cannot imagine life without her.

God gives us gifts, and it is not our decision to say we don’t want them. There is a reason we are not all the same. My daughter is just as “typical” as my other two sons, she was just born with an extra chromosome!

I have a child with Down Syndrome…I agree with you. We should make photo albums and video tapes of our children and show people how much our children are “suffering.” This is what our doctors need to hand out to inform women to make unbiased decisions on the life of a child with Down syndrome…show them how they actually live.

Parents often also fear how “hard” and “terrible” it would be to have a child with Down syndrome. In all honesty, I was also anxious about this unknown fear before my son was born. I am not saying that it hasn’t been difficult at times. But I can gladly say, with all my heart, that my son has provided more happiness to my life than I ever dreamed possible and this happiness helps me to gladly accept the difficult times.

What a wonderful blessing from God these children are to us. I can only conclude that either people are not well informed about how people with Down Syndrome are such a blessing or, sadly and selfishly,they do not want to receive blessings from God.

Mindy Reigstad

There are writers who would refer to my daughter as “afflicted”. After all, she does have Down syndrome. I don’t know how anyone could know her and think she is afflicted, but that’s part of this whole debate. People still don’t get it.

Americans live under an illusion of perfection. Perfection is an American illusion. I agree that people should have choices, but those choices need to be informed choices and our research is showing us that women aren’t given adequate information by the people they are most trusting of (medical professionals).

For example, when I was deciding whether to have a baby since I was over the age of 35, my gynecologist said, ‘Well of course you would have prenatal testing and if the baby had Down syndrome, you could terminate.” Needless to say, I switched to another ob-gyn. Ironic that my baby had Down syndrome, but that was part of what has motivated me.

I was told nothing about Down syndrome, just that if my test during a pregnancy that had not even occurred showed that my unborn child had Down syndrome, we would terminate….. That is the kind of information women are given and they then make choices based on that type of information.

We need to give women informed choices and it is unethical and morally wrong not to provide accurate information during a critical decision making process.

I was with you at the ACOOG conference in St. Louis.

You are a terrific speaker, and had so many excellent ideas that in all honesty I am not sure where to start … but I guess it starts with me first.

I delivered news of a suspected (baby with Down syndrome) and when the amnio was negative she was upset with me and left my practice.

It will be a balance of how to discuss with patients and patient expectations.

Keep on spreading the word, only by education and understanding will you be able to make a change in the world.

Dr. Dave

Heather Kaine