Patient Resources from the Down Syndrome Program at MGfC and Mass General
Resources for Expectant Parents
- Understanding a Down Syndrome Diagnosis
A booklet of information for expectant couples who have received a prenatal diagnosis of Down syndrome and have not yet made a pregnancy decision. - Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome
A booklet of information for expectant couples who are preparing for the birth of their baby with Down syndrome. - Your Loved One is Having a Baby with Down Syndrome
A booklet for expectant parents to give to family, friends, and co-workers, explaining Down syndrome. - MDSC’s First Call Program
A volunteer, state-wide group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information.
Resources for Families Coping with a Miscarriage or a Loss
- Coping with Loss: Down Syndrome
A book that offers support to families who have experienced a miscarriage or lost a baby or child with Down syndrome
Resources for New Parents
- Breastfeeding Your Baby With Down Syndrome | View PDF
- Down Syndrome: Answers to the Most Searched Questions
What causes Down syndrome? How can you tell someone has Down syndrome? Can Down syndrome be treated? Brian Skotko, MD, MPP, medical geneticist and Emma Campbell Endowed Chair on Down Syndrome at MGfC, answers patients' most commonly searched questions about Down syndrome. - Down Syndrome for New Parents: What to Know During the First Year
What will the first year of life be like for a baby with Down syndrome? What kind of support and care do they need? What is it like being a sibling of a child with Down syndrome? Brian Skotko, MD, MPP, medical geneticist and Emma Campbell Endowed Chair on Down Syndrome at Mass General for Children, explains what parents can expect during the first year of raising a child with Down syndrome, including information on breastfeeding, necessary testing and more. - Helpful Resources for Your Baby with Down Syndrome
A list of resources from the MGfC Down Syndrome Program about Down syndrome, breastfeeding support and Early Intervention. - Welcoming a Newborn with Down Syndrome: A New Parent’s Guide to the First Month
A book offering support and accurate, reliable information on everything parents need to know for that first month. - MDSC’s First Call Program
A volunteer, state-wide group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information
Disability Organizations
Local Organizations
- Massachusetts Down Syndrome Congress (MDSC)
- Massachusetts Department of Developmental Services (DDS)
National Organizations
- The Arc
- Best Buddies
- Down Syndrome Affiliates in Action
- Global Down Syndrome Foundation
- LuMind IDSC Down Syndrome Foundation
- National Down Syndrome Congress (NDSC)
- National Down Syndrome Society (NDSS)
- Special Olympics
Types of Down Syndrome
- Mosaic Down Syndrome | View PDF
- Translocation Down Syndrome | View PDF
- Trisomy 21 Down Syndrome | View PDF
Directions to Your Appointment
Sleep and Apnea
- Breathing Mask, How to Wear with Success | View PDF
- Obstructive Sleep Apnea | View PDF
- My Face Mask: A Coloring Book of Adventures (PDF)
- Sleep Studies for Children and Teens (PDF)
- Sleep Studies for Adults (PDF)
- Obstructive Sleep Apnea in Children with Down Syndrome | View PDF
- Preparing for Your Child's Sleep Study | View PDF
- Treatments for Obstructive Sleep Apnea | View PDF
Other Medical Information
- Abnormal Blood Tests | View PDF
- Atlanto-Axial Instability (AAI): What You Need to Know | View PDF
- ADHD in Individuals with Down Syndrome (video)
- Autism Spectrum Disorder and Down Syndrome (DS-ASD): What You Need to Know | PDF
- Behaviors of Children with Down Syndrome | View PDF
- Birth Control: Choosing One That Works for You | View PDF
- Blood Tests in Children with Down Syndrome | View PDF
- COVID-19 and Down Syndrome: What You Need to Know
- Dental Care Tips for People with Down Syndrome | View PDF
- Dentist Visit: How to Prepare | View PDF
- Dry and Sensitive Skin Care Tips | View PDF
- Flu: Flu Vaccine Information for People with Down Syndrome | View PDF
- Gout: What You Need to Know | View PDF
- Hearing Loss | View PDF
- Headshape Differences in Infants: What You Need to Know | View PDF
- Hematologic and Oncologic Conditions in Down Syndrome: For PCPs | View PDF
- Español: Afecciones Hematológicas y Oncológicas en Personas con Síndrome de Down: Descripción General Para El Proveedor De Atención Primaria | PDF
- Infantile Spasms | View PDF
- Leukemia and Down Syndrome: What You Need to Know | View PDF
- Moyamoya Syndrome: What You Need to Know | PDF
- Physical Activity: Moving More: The Importance of Physical Activity | PDF
- Regression and Down Syndrome | View PDF
- RSV: How Palivizumab Can Prevent RSV in Babies with Down Syndrome | View PDF
- Vaccines to Consider for People with Down Syndrome | View PDF
Family Resources
- Grief: How to Help When Your Loved One Is Grieving | View PDF
- Guardianship Checklists and Guide (PDF)
- New Parents: Helpful Resources for Your Baby with Down Syndrome | PDF
Imaging
- MRI: What to Expect | View PDF
- عربى ما الذي يمكننا توقعه من مخطط حركة الأمعاء الخاصة (MRI)بالطفل (الأشعة بالرنين المغناطيسي | PDF
- Español: Obtención De Imágenes Por Resonancia Magnética (MRI) | PDF
- Kreyòl Ayisyen: Imajri a Rezonans Mayetik (MRI) | PDF
- Português: Imagem de Ressonância Magnética (IRM) | PDF
- Sedation/General Anesthesia: What to Expect | View PDF
- تعليمات ما بعد المسكن أو التخديرعربى | PDF
- Español: Sedación/Anestesia General (GA) | PDF
- Kreyòl Ayisyen: Sedatif Anestezi - Jeneral (GA) | PDF
- Português: Sedação Por Anestesia Geral (AG) | PDF
- Sedation/General Anesthesia: Home Care Instructions | View PDF
- تعليمات ما بعد المسكن أو التخديرعربى | PDF
- Español: Instrucciones Para Después De La Sedación O Anestesia | PDF
- Kreyòl Ayisyen: Enstriksyon Pou Suiv Apre Yon Sedatif Oswa Apre Yon Anestezi | PDF
- Português: Instruções Após Sedação Ou Anestesia | PDF
- Video Swallow Study: What to Expect | View PDF
Celiac Disease
Constipation
- Medications to Ease Constipation | View PDF
- Understanding Constipation in Children with Down Syndrome | View PDF
Nutrition and Feeding Resources
Contact a Specialist
Infant
- Breastfeeding Your Baby With Down Syndrome | View PDF
- Informação útil sobre a lactação materna e os bebês com síndrome de Down
- Información útil sobre la lactancia materna y su bebé con síndrome de Down | PDF
- Breast Milk or Formula, Tips to Offer | View PDF
Toddler
General Nutrition
- Healthy Drink Options: Sip Something Simple: An Easy Guide to Drinking Less Sugar | View PDF
- Hydration: Tips to Drink More Water - I Need It, You Need It, We All Need It! | View PDF
- Iron Deficiency: Tips to Treat Iron Deficiency with Diet | View PDF
- Iron Deficiency Anemia: What You Need to Know | View PDF
- Español: Información para comprender la anemia por deficiencia de hierro en personas con síndrome de Down | PDF
- Lactose-Free v. Dairy-Free How to Tell the Difference | PDF
- Living a Healthier Lifestyle (PDF)
- Nutrient Density | View PDF
- Eating Fiber to Ease Constipation | View PDF
- Eating Fiber to Ease Constipation on a Gluten-Free Diet | View PDF
- Vitamin C: Tips to Get More Vitamin C from Food
Texture Progression
- Purees, Starting | View PDF
- Purees Food Chart | View PDF
- Thick Purees, Starting | View PDF
- Thick Purees Food Chart | View PDF
- Soft Solids, Starting | View PDF
- Soft Solids Food Chart | View PDF
- Solids That Are Harder to Chew, Starting | View PDF
Life Skills Handouts
- Asking Someone I Trust for Help (PDF)
- Bathing and Showering by Myself (PDF)
- Brushing Teeth (for Families) | View PDF
- Calling 911 (PDF)
- Doctor's Visit: How to Prepare | View PDF
- Getting Dressed By Myself (PDF)
- Health Insurance: What You Need to Know | View PDF
- Healthy Lifestyle: How to Live a Healthy Lifestyle (PDF)
- Household Chores (PDF)
- Laundry: I Can Do Laundry on My Own! (PDF)
- Personal Information: How to Share | View PDF
- How Can I Stay Active? (PDF)
- Physical Activity: Learning How to Wear My Physical Activity Belt (PDF)
- Practice Sheet: Learning My Personal Information (PDF)
- Prescription Medications: What You Need to Know | View PDF
- Public Restroom, Using a (PDF)
- Public Transportation, Using on My Own (PDF)
- Safety Around Strangers (PDF)
- Sleep: Creating a Bedtime Routine (PDF)
- Swallowing a Pill By Myself (PDF)
- Talking to the Doctor (PDF)
Pediatric Health Information Library (PHIL)
Find educational materials on a wide range of pediatric health topics and specialties.