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 | PDF
- Información útil sobre la lactancia materna y su bebé con síndrome de Down | PDF
- ダウン症のある赤ちゃんの母乳育児について (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
Directions to Your Appointment
Sleep and Apnea
- Breathing Mask, How to Wear with Success | PDF
- Obstructive Sleep Apnea | 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 | PDF
- Español: Apnea Obstructiva Del Sueño En Niños Con Síndrome de Down | PDF
- ダウン症のある子どもの 閉塞性睡眠時無呼吸症候群について (PDF)
- Preparing for Your Child's Sleep Study | PDF
- Treatments for Obstructive Sleep Apnea | PDF
Other Medical Information
- Abnormal Blood Tests | PDF
- Atlanto-Axial Instability (AAI): What You Need to Know | PDF
- Español: Inestabilidad Atlantoaxoidea: (IAA): Lo Que Necesita Saber | PDF
- 環軸椎不安定症（AAI）：知っておきたいこと (PDF)
- ADHD in Individuals with Down Syndrome (video)
- Autism Spectrum Disorder and Down Syndrome (DS-ASD): What You Need to Know | PDF
- ダウン症と自閉スペクトラム症（DS-ASD) (PDF)
- Behaviors of Children with Down Syndrome | PDF
- Birth Control: Choosing One That Works for You | PDF
- Blood Tests in Children with Down Syndrome | PDF
- COVID-19 and Down Syndrome: What You Need to Know
- Dental Care Tips for People with Down Syndrome | PDF
- ダウン症のある人のためのデンタルケアのポイント (PDF)
- Dentist Visit: How to Prepare | PDF
- Dry and Sensitive Skin Care Tips | PDF
- Flu: Flu Vaccine Information for People with Down Syndrome | PDF
- Español: Información sobre la vacuna contra la gripe para personas con síndrome de Down | PDF
- ダウン症のある人のためのインフルエンザワクチン情報 (PDF)
- Gout: What You Need to Know | PDF
- Hearing Loss | PDF
- Headshape Differences in Infants: What You Need to Know | PDF
- Hematologic and Oncologic Conditions in Down Syndrome: For PCPs | PDF
- Español: Afecciones Hematológicas y Oncológicas en Personas con Síndrome de Down: Descripción General Para El Proveedor De Atención Primaria | PDF
- Infantile Spasms | PDF
- Leukemia and Down Syndrome: What You Need to Know | PDF
- Español: Leucemia En Personas Con Síndrome de Down: Lo Que Necesitas Saber | PDF
- ダウン症のある人の白血病：知っておきたいこと (PDF)
- Moyamoya Syndrome: What You Need to Know | PDF
- もやもや病：知っておきたいこと (PDF)
- Physical Activity: Moving More: The Importance of Physical Activity | PDF
- もっと動こう！：運動の重要性 (PDF)
- Regression and Down Syndrome | PDF
- RSV: How Palivizumab Can Prevent RSV in Babies with Down Syndrome | PDF
- Español: Cómo puede el palivizumab proteger a los bebés con síndrome de Down del VRS | PDF
- パリビズマブ（シナジス®）はどのようにダウン症のある乳児をRSV（RSウイルス）から守るのか？ (PDF)
- Thyroid medication: how to give to your baby (PDF)
- Vaccines to Consider for People with Down Syndrome | PDF
Family Resources
- Grief: How to Help When Your Loved One Is Grieving | PDF
- A Practical Guide to Guardianship and Alternatives in Massachusetts (PDF)
- Guardianship Checklists and Guide (PDF)
- New Parents: Helpful Resources for Your Baby with Down Syndrome | PDF
Imaging
- MRI: What to Expect | 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 | 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 | 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 | PDF
Celiac Disease
Constipation
- Medications to Ease Constipation | PDF
- Understanding Constipation in Children with Down Syndrome | PDF
Nutrition and Feeding Resources
Contact a Specialist
Infant
- Breastfeeding Your Baby With Down Syndrome | 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
- ダウン症のある赤ちゃんの母乳育児について (PDF)
- Breast Milk or Formula, Tips to Offer | PDF
Toddler
- Healthy Eating Tips for Toddlers | PDF
- Español: Consejos sobre alimentación saludable para infantes con síndrome de Down | PDF
- ダウン症のある幼児のための健康的な食事のヒント (PDF)
- Picky Eating Tips for Toddlers | PDF
General Nutrition
- Healthy Drink Options: Sip Something Simple: An Easy Guide to Drinking Less Sugar | PDF
- Hydration: Tips to Drink More Water - I Need It, You Need It, We All Need It! | PDF
- Iron Deficiency: Tips to Treat Iron Deficiency with Diet | PDF
- Iron Deficiency Anemia: What You Need to Know | 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 | PDF
- Eating Fiber to Ease Constipation | PDF
- Eating Fiber to Ease Constipation on a Gluten-Free Diet | PDF
- Vitamin C: Tips to Get More Vitamin C from Food
Texture Progression
- Purees, Starting | PDF
- Purees Food Chart | PDF
- Thick Purees, Starting | PDF
- Thick Purees Food Chart | PDF
- Soft Solids, Starting | PDF
- Soft Solids Food Chart | PDF
- Solids That Are Harder to Chew, Starting | PDF
Life Skills Handouts
- Asking Someone I Trust for Help (PDF)
- Bathing and Showering by Myself (PDF)
- Brushing Teeth (for Families) | PDF
- Calling 911 (PDF)
- Doctor's Visit: How to Prepare | PDF
- Getting Dressed By Myself (PDF)
- Health Insurance: What You Need to Know | PDF
- Healthy Lifestyle: How to Live a Healthy Lifestyle (PDF)
- Household Chores (PDF)
- Español: Ayudando En Las Tareas Del Hogar (PDF)
- 家事のお手伝い (PDF)
- Laundry: I Can Do Laundry on My Own! (PDF)
- Español: ¡Puedo Lavar Mi Ropa Yo Mismo! (PDF)
- 自分で洗濯しよう (PDF)
- Personal Information: How to Share | 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 | PDF
- Public Restroom, Using a (PDF)
- Español: Cómo Usar Un Baño Público (PDF)
- 公衆トイレの利用 (PDF)
- Public Transportation, Using on My Own (PDF)
- Safety Around Strangers (PDF)
- Sleep: Creating a Bedtime Routine (PDF)
- Español: Cómo Crear Una Rutina Nocturna (PDF)
- 就寝前の習慣づくり (PDF)
- Swallowing a Pill By Myself (PDF)
- Español: Cómo Aprender A Tragar Una Píldora (PDF)
- 錠剤の飲み方を学ぶ (PDF)
- Talking to the Doctor (PDF)
- Español: Hablando Con El Doctor (PDF)
- かかりつけ医との対話 (PDF)
Pediatric Health Information Library (PHIL)
Find educational materials on a wide range of pediatric health topics and specialties.