If you are trying to decide whether to undergo prenatal screening, or if you have received an unexpected prenatal diagnosis, following are a few links to resources you might find helpful. You may also call the Jerome Lejeune Foundation, USA at 267-403-2910. We would be happy to speak with you at any time.

The first thing you must know, is that families who have children with Down syndrome report a very high level of happiness and satisfaction. This is a difficult truth to accept for many following a prenatal diagnosis, but far from devastating, research done by Dr. Brian Skotko showed that:

• 99% of people with Down syndrome said they were happy with their lives
• 97% of people with Down syndrome liked who they are
• 99% of parents said they love their child with Down syndrome
• 5% of parents felt embarrassed by their child
• 97% of brothers/sisters, ages 9-11, said they love their sibling

*All of the survey results were published in the American Journal of Medical Genetics.

Unfortunately, in a 2013 poll, 1 in 4 women reported that after receiving a prenatal diagnosis for Down syndrome they felt pressured by their medical provider to end their pregnancy. The topic of abortion is offensive to many woman and their partners, especially at such a sensitive time. While abortion is a legal option some choose, the Jerome Lejeune Foundation regrets that many believe it is their only choice. We encourage families to become well informed regarding the positive outcomes of giving birth to a child with Down syndrome or another intellectual or developmental disability. If families don't believe they are able to raise a child with a disability, they might consider adoption as a loving choice for their child. There are many families waiting to adopt children with disabilities, especially Down syndrome, through organizations like Reece's Rainbow, or the National Down Syndrome Adoption Network.

There are remarkable stories of mothers and fathers who never thought they could raise a child with an intellectual disability, but whose lives were transformed by the love of their special children. Some families have written about their experience for us to share with you at our website. Your's can be a positive and love-filled experience too!

We have listed a few organizations below that we trust to provide good information and support to those who are looking for assistance or feel afraid after a prenatal diagnosis.

Support Services

• Be Not Afraid's mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term. There is no phone hotline, but a contact form is provided at the site.

• The Down Syndrome Diagnosis Network is a group of women who have all experienced a prenatal diagnosis of Down syndrome and wish to share current information and support with others.

• The International Down Syndrome Coalition (IDSC) has various resources for parents available at their site, including a support group available to those who register.

Blogs

• Down Syndrome Prenatal Testing is blog written by Mark Leach, an attorney and the father of a child with Down syndrome. Mark's blog provides great information and links to several other resources available on the internet.
• Thin Places is a blog written by Amy Julia Becker, mother of a child with Down syndrome. Amy Julia also has an e-book available called What Every Woman Needs to Know about Prenatal Testing. It can be downloaded from Amazon.

Information on Prenatal Tests and Genetic Testing in General

• The Genetic Support Foundation is an independent, non-profit organization committed to providing objective, up-to-date information about genetics for patients, providers, and healthcare organizations.
• This site offers extensive information on the prenatal tests, and testing options available. It does not provide advice or recommendations to those who have received test results.
• The National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky Human Development Institute has extensive resources available at their various sites. While advocating for positive information regarding outcomes of children born with Down syndrome, the Center remains neutral on the question of abortion, acknowledging it as the choice some make.

Publications Online

• Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome is an informative resource provided through the National Center for Prenatal and Postnatal Down Syndrome Resources regarding how to prepare for birth, and what to expect pre and post delivery, both medically and in the community of family and friends.
• What Every Woman Needs to Know about Prenatal Testing has already been mentioned above.