Welcoming Babies with Down Syndrome
If you are welcoming a new baby with Down syndrome into your family, you probably have many questions and concerns, as do your extended family, friends and neighbors. We have written this information considering our own diverse experiences when we gave birth to our children with Down syndrome.
Congratulations on the birth of your baby. We wish you all the best.
A Thought from Families
Allow your family, friends and neighbors some time to learn about Down syndrome, reminding them if necessary that Ds is just a small part of your child’s identity. It is a small part of your child’s genetic makeup. Staying integrated in your mainstream community is important to your child’s development and your peace of mind.
Try to get some rest. You are allowed to feel however you feel, and so are others who love you and your baby. Childbirth is hard work; many of your emotions stem from a new life coming into your family. You deserve congratulations and wonderful gifts. Have the good cooks among your family and friends bring over their best meals. Take time to welcome and enjoy your baby. They grow up fast.
Resources for New Families
Expectant parents want up-to-date information about Down syndrome, its causes, and expectations for a child living with Down syndrome today. The following websites are incredible resources for new families. Please contact Down syndrome Outreach if you have any questions regarding these resources.
Statewide and Regional Support Resources for Families who Have a Member with Down syndrome by the Washington State Department of Health
This booklet, by Lettercase, was prepared with assistance from the Down Syndrome Consensus Group which includes representatives of The National Society of Genetic Counselors, The American Congress of Obstetricians and Gynecologists, The National Down Syndrome Society, and The National Down Syndrome Congress. It is also recognized by the WA State Department of Health as a lead resource for new families and physicians.
Parents & medical professionals can access the booklet Understanding A Down syndrome Diagnosis by Lettercase for free online: www.understandingdownsyndrome.org
It is available on computer, phone or tablet. This booklet is offered in English, Spanish, Korean, Vietnamese, Japanese, Chinese, Russian, and Somali.
Each patient can request one free hard copy of the booklet: http://lettercase.org/free-booklets/
Click here for more information about how to order the Understanding a Down syndrome Diagnosis booklet and other resource materials.
The National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute oversees three medically reviewed programs that complement each other and work together to provide layers of support throughout the prenatal and postnatal stages: Brighter Tomorrows, Lettercase, and Down Syndrome Pregnancy. These programs also offer valuable resources for medical professionals delivering those diagnoses. When you their website you will be able to go to all of those partner programs. www.downsyndromediagnosis.org
Resources for New and Expectant Parents & Medical Professionals. Provides a comprehensive website with information in English and Spanish for new and expectant parents learning about Down syndrome. Includes the most current research about Down syndrome, links to resources, and life glimpses. http://brightertomorrows.org/
Resources for Expectant Parents & Medical Professionals. Offers the Kennedy Foundation’s “Understanding a Down Syndrome Diagnosis” booklet that was prepared with assistance by representatives of the national medical and Down syndrome organizations. The booklet is intended for pregnant women first finding out about a prenatal Down syndrome diagnosis. Includes basic information about Down syndrome and about families who have a child with Down syndrome; potential medical complications; resources about Down syndrome; and reproductive options. Available in print or as a free digital download in English and Spanish. http://lettercase.org/
Lettercase Resource Links:
- Understanding a Down Syndrome Diagnosis and Translations: http://understandingdownsyndrome.org
- Understanding a Turner Syndrome Diagnosis: http://understandingturnersyndrome.org
- Delivering a Prenatal or Postnatal Diagnosis Bi-fold: http://lettercase.org/delivering/
- Understanding Prenatal Screening and Testing Pamphlet: http://lettercase.org/prenataltesting/
- Comprensión de Estudios Prenatales y de Exámenes para la Detección de Condiciones Cromosómicas Folleto (Not on website yet.)
Resources For Expectant Parents. Offers a website with a blog for women who are pregnant and expecting a baby with Down syndrome. Also includes the books “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” and “Your Loved One is Having a Baby with Down Syndrome” available as free digital downloads or printed books from the distributor, Woodbine House. http://downsyndromepregnancy.org/
Down Syndrome Pregnancy Resource Links:
- Welcoming a Newborn with Down Syndrome: A New Parent’s Guide to the First Month: http://downsyndromepregnancy.org/book/welcoming-a-newborn-with-down-syndrome/
- La bienvenida a un bebé con síndrome de Down: Una guía para nuevos padres: http://downsyndromepregnancy.org/book/la-bienvenida-a-un-bebe-con-sindrome-de-down/
- Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome: http://downsyndromepregnancy.org/book/diagnosis-to-delivery/
- Del diagnóstico al nacimiento: Una guía para las mujeres embarazadas de un bebé con síndrome de Down: http://downsyndromepregnancy.org/book/del-diagnostico-al-nacimiento/
- Your Loved One Is Having a Baby with Down Syndrome: http://downsyndromepregnancy.org/book/your-loved-one/
- Coping with Loss: Down Syndrome: http://downsyndromepregnancy.org/book/coping-with-loss/