Congratulations on the news of your beautiful baby! We understand that your life has taken an unexpected turn and everyone experiences this process in their own way. We want you to know that we understand and we are here for you when you are ready. 
We know the new path you are on will come with some unique challenges and different experiences, but please know you are not alone. There is a very compassionate, knowledgeable and welcoming community for you to be a part of.

Our organization is made up of many wonderful families who have gone before you on this journey and are here to support families affected by Down syndrome, from before birth and throughout your life.

Whenever you are ready to share your experience and learn more about this journey, please contact our Visiting Parents Team. Phone: 780-944-4224 X222 or Email: Visting Parents Team

The best piece of wisdom we can share with you at this moment is to give your baby exactly what all babies’ need – love, nutrition and lots of snuggles. Enjoy each and every moment of this time because before you know it your baby will grow, walk, learn and experience accomplishments just like any other child – they will just do it at their own pace.

Warmest regards,

Members of the EDSS

All children born with Down syndrome will have some degree of a delay in learning. As with all children it is difficult to predict what may be their strengths and /or weaknesses when they are newborns.

When the Prime Minister was born his parents did not know he would one day be Prime Minister. For the first six months of your child’s life there will be little difference between them and other children, unless there are underlying medical concerns. Your only job as a parent is to love them and nurture them. In people born with Down syndrome the learning process is slightly different. Children need to be encouraged to develop to their full potential but not put under undue pressure to achieve.

The information below will provide you with the clinical guidelines for your baby. 

Medical:

         History:

• Review parental concerns.
  
• Was there a prenatal diagnosis of DS?
  
• With vomiting or absence of stools, check for gastrointestinal tract blockage (duodenal web or atresia, or Hirschsprung disease);
  
• Review feeding history to ensure adequate caloric intake;
  
• Any concerns about hearing or vision? Inquire about family support.
  
  Exam:
  
• Pay special attention to cardiac examination;
  
• Cataracts (refer immediately to an ophthalmologist if the red reflex is not seen);
  
• Assess ear canals- can you visualize tympanic membranes (smaller in this population)
  
• Fontanelles may be larger with a sagittal fontanelle gap from anterior to posterior fontanelle.
  
• Exam for plethora, petechiae (thrombocytopenia).
  
  Lab and Consults:
  
• Chromosomal karyotype; genetic counseling;
  
• Hematocrit or complete blood count to investigate plethora (polycythemia) or thrombocytopenia (possible myeloproliferative disorders);
  
• Thyroid function test – check on results of provincial neonatal screening;
  
• Evaluation by a pediatric cardiologist including echocardiogram (even in the absence of a murmur);
  
• Reinforce the need for subacute bacterial endocarditis (SBE) prophylaxis in susceptible children with cardiac disease; ** new guidelines attached**
  
• Refer for auditory brainstem response (ABR) or oto-acoustic emission (OAE) test to assess congenital sensorineural hearing at birth or by 3 months of age.
  
• Refer for a pediatric ophthalmologic evaluation by six months of age for screening purposes.
• Refer immediately if there are any indications of nystagmus, strabismus, absent reflexes or poor vision.
  
• If feeding difficulties are noted, consultation with feeding specialist (occupational therapist or lactation consultant) is advised.

 First Down Syndrome Clinic Visit

• Ideally 7–10 days after hospital discharge (at physician's discretion)

   Feeding Resources

• Breastfeeding Your Baby with Down Syndrome | La Leche League Canada
• Stories | La Leche League Canada - Breastfeeding Support and Information 

• • Bottle Feeding Tips – Talk Down syndrome

  Downright Lucky Team – Edmonton Down Syndrome Society

**Formerly known as Visiting Parents Team 
Everyone experiences this process in their own way. Some parents feel ready to connect with other parents who have children born with Down syndrome within the first weeks or months after their child is born, while others might prefer to wait until their child is older and they have questions or would like to further develop their network of support.

Whenever you are ready to share your experience and learn more about this journey, please contact our Downright Lucky Team.

*Each member has completed a training program provided by the Canadian Down Syndrome Society (CDSS). It is important that you feel safe enough to share your thoughts and feelings; this can be an emotional time. All team members have signed a confidentiality agreement to ensure that your privacy is protected.

Phone: 780.944.4224  Ext: 2
Email: Downright Lucky Team
9139-39 Ave NW, Edmonton, AB T6E 5Y2

*Parent mentors are also available for parents of older children and can provide support and information to help parents cope with the challenges which sometimes arise in raising a child with Down syndrome.

  Placard for your vehicle - Get a parking placard for people with disabilities | Alberta.ca

  FSCD (Family Supports for Children with Disabilities) - FSCD provides funding and support to help Alberta families access services and community resources tailored to children with physical, intellectual, and developmental disabilities. 

• Provides funding and services tailored to children with disabilities.
• Application can take up to 2 years — apply early!

FSCD Overview

Apply via MyAlbertaSupports

Easter Seals offers workshops held by experienced Resource Coordinators to help

new applicants understand, access, and manage FSCD funding and services.

  FSCD Navigation Workshops

  Early Intervention & Infant Development - Infant development programs (commonly known as early intervention services) can change a child’s developmental path and improve outcomes for children, families, and communities. Families benefit from infant development programs by being able to better meet their children’s needs from an early age and throughout their lives. Infant development refers to programs that are available for children from birth to 3.5 years old with two or more developmental delays and/or a diagnosed disability.

• Early Childhood Intervention Program (ECIP) (Ages 6–9 months), Connect with your local Alberta Health Services or regional ECIP office
• Programs support development in motor skills, communication, social interaction, and more

Common therapies: Common therapies include physical therapy, speech-language pathology, and occupational therapy. Check with your provider that these services are covered through FSCD or another funding program. If they aren’t covered, you will be paying out of pocket.

  Physical Therapy (PT)

Learn More:

Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals 

  Occupational Therapy (OT)

Providers:

OT Rainbow - Locations

  Speech-Language Pathology (SLP)

Learn More:

Down Syndrome Health Issues - Speech & Language

Down Syndrome Education - Speech & Communication Guide

WHAT DID YOU SAY: A Guide to Speech Intelligibility in People with Down Syndrome

Providers:

Alberta Speech-Language Association of Private Practitioners (ASAPP)

University of Alberta - Institute For Stuttering Treatment And Research (ISTAR) 

Other Providers: These providers offer therapies funded through FSCD, such as speech-language pathology, occupational therapy, physical therapy, and behaviour therapy. Check each program to ensure that the therapies offered, funding timelines, and age requirements meet your child’s needs.

• Robin Hood Association Behavioural Development Supports 
  • Six month funding agreements for children under 17 years and 11 months
• Pediatric Rehabilitation - Alberta Health Services
• Glenrose Rehabilitation Hospital - Alberta Health Services

EDSS also offers physical therapy, occupational therapy, speech language pathology, and behavioural therapy services. Contact us to learn more!

Health resources:

Children with Down syndrome are at an increased risk for many conditions, such as heart conditions, low thyroid hormone levels, stomach and bowel problems, and seizures. Regular doctors visits can help mitigate these risks and ease your worry as a parent. They can also help administer routine vaccinations and provide advice regarding ways to promote healthy activities at home.

HealthyChildren.org - Down Syndrome Health Care Guide

Pediatric Autism & Specialty Services (PEAS) - Alberta Health Services

Additionally, many health milestones are coming up! Children with Down syndrome are at an increased risk for conditions that could lead to sight or hearing loss. First eye exams are recommended at birth and again at 1 year or sooner, and hearing check-ups are recommended every 6 months.

  Vision:

Vision for Children With Special Needs 

Erin's World Frames

  Hearing:

City of Edmonton - Services for the Heard of Hearing or Deaf 

MyHealth Alberta - Hearing Loss in Children with Down Syndrome

Melody Audiology

• Join a local Down syndrome parent group for family support
  
• Apply for FSCD (family support for children with disabilities)
• Referrals to Homecare and Early Intervention
  
• Discuss child tax credit