The Down Syndrome Association of Toronto (DSAT)

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Last Updated on Monday, 13 March 2017 21:58

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New Parents Paediatrician Info


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What do I need to talk about with my paediatrician?

As parents, when you receive a diagnosis of Down Syndrome (DS) for your baby, it is often accompanied by fears about the health of your child. Many children born with DS are perfectly healthy. However, certain medical conditions are more common in children with DS. Because of this, some specialized tests will be performed in the first month (potentially in the first week) after birth. These will help your doctor determine if your child needs more specialized medical care.


Click here to learn more about the medical surveillance for children with DS in the first year

Your child should have regular visits with their doctor and some specialized testing will be done. All of these will be alongside the standard visits for the first year which will include weight checks, growth checks, immunizations, and general support about having a baby. Right now, you are probably most concerned with immediate medical issues. We’ve summarized the extra medical attention that babies with DS will encounter in their first year here:

chart 2

** Respiratory Syncytial Virus (RSV) prophylaxis only takes place during the winter. All babies with DS are eligible for this program until they are 24 months old.


Click here for more links for information about medical conditions and health supervision for children with DS

There are thorough guidelines for doctors to refer to when caring for babies diagnosed with DS and they outline everything from birth through toddler-dom to adolescence and adulthood. Some parents are looking for detailed information and others are reassured by focusing on the immediate concerns and waiting to learn more as they need to. If you would like more information, the following links are the current guidelines that paediatricians and specialists consult.

Clinical Report – Health Supervision for Children with Down Syndrome. Pediatrics. July 25, 2011

A guide to the above document, prepared for families, can be found here:

Health Care Information for Families of Children with Down Syndrome

The National Down Syndrome Society (NDSS) is based in the United States and is an excellent resource for information. They have a comprehensive page regarding medical conditions associated with DS. This includes information that is relevant from birth through adulthood.

Click here to learn more about the medical issues that are investigated immediately after birth

The first month after birth can seem overwhelming from a medical point of view. Ultimately, there are 6 common medical concerns that doctors are considering. We’ve outlined them below, alongside the prevalence in children with DS and the tests that doctors will use to detect them.

Post-Birth Chart

Although many of these issues seem very frightening, early detection will mean your child can receive treatment quickly to overcome any limitations these health concerns pose. Many of us in the DSAT community have faced these medical conditions. If you would like to talk to someone whose child has been diagnosed with a specific medical complication, please contact the DSAT peer support coordinator.

*Clinical Report – Health Supervision for Children with Down Syndrome. Pediatrics. July 25, 2011


Click here to learn more about the types of medical care available in Toronto for children with DS

Many children with DS are followed by a paediatrician, a doctor specializing in the medical care of children, to ensure that all medical and developmental aspects that are affected by DS are considered. However, other families choose to have their child enter the practice of a family physician. To find a doctor for your child, you can contact the College of Physicians and Surgeons of Ontario.


Here in Toronto, there is a Down Syndrome clinic at SickKids Hospital. Some children can become patients at this clinic. All children aged 0-3 with DS can benefit from the information and referral services that the clinic provides to paediatricians and family doctors caring for children with DS.

Last Updated on Friday, 25 September 2015 21:54

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New Parents Support Feeding

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How can I support feeding my baby now that we have a Down syndrome diagnosis?

Many new parents worry that the diagnosis of DS will affect how they need to approach feeding their new baby. Fortunately, this is an issue that is common to both parents of typical children and parents of children with DS. In the first few months, it can seem like feeding is all that your day revolves around!

It’s widely acknowledged that breastfeeding can be highly beneficial for babies with Down syndrome. Breast milk provides protective properties from the mother that are not replicated in formula. This can be especially important in babies with DS as they can be more susceptible to infections, particularly respiratory infections. Furthermore, breastfeeding can help develop oral motor skills that will be important throughout your child’s development. However, establishing a good breastfeeding relationship can be affected by low muscle tone and every mother needs to decide what works best for her and her baby.

Many of us reached out extensively to lactation consultants and breastfeeding clinics to support us through the early days. For many of us, a combination of breastfeeding, pumping, formula and bottle feeding was what supported our children through their first weeks as their strength grew and we, as parents, became more comfortable with our new routines. Pumping and breastfeeding aids may be particularly helpful during the first few months, allowing your child to receive breast milk even if latching and strength are issues you face.

We’ve gathered some information regarding breastfeeding babies with DS:

Breastfeeding a Baby with Down Syndrome – Canadian Down Syndrome Society

La Leche League – Breastfeeding Babies with Down Syndrome

Breastfeeding your baby with Down Syndrome

We’ve also put together a list of breastfeeding/feeding resources here in Toronto, highlighting those that have experience supporting newborns with Down syndrome:

Toronto Public Health – Breastfeeding Support

Newman International Breastfeeding Clinic

Better Breastfeeding Clinic (has supported newborns with Down syndrome)

Latch Lactation (west Toronto, Etobicoke, Mississauga)

La Leche League – Toronto Locations

Doctors' Breastfeeding Clinic (has supported newborns with Down syndrome)

(888) 807-0650 or (289) 233-1957

Doctors' Breastfeeding Clinic Facebook page

GTA breastfeeding Support group on facebook

Private lactation consultant with experience supporting newborns with Down syndrome: Carolyn Barrera does home visits. 416-270-1091

Last Updated on Friday, 25 September 2015 21:52

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New Parents Financial and Estate Planning

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Are there different things I now need to consider in terms of Financial and Estate Planning?

The short answer is maybe. It is hard to tell what any child will need tomorrow or next year, much less when they become an adult, but it is probably best to consult with an expert and see what is possible. Please note that DSAT is not making any recommendations about what you should or should not do, but rather we want to provide information so you can explore your options and make the decisions that work for you and your family.

Whoever you choose to consult with, make sure they are familiar with the following topics:

1. Registered Disability Savings Plans (RDSPs)

2. Henson trusts

3. Registered Education Savings Plans (RESPs)

In Toronto there are some services that provide specialized advice:

1. Special Needs Planning Group

2. Partners for Planning

Last Updated on Friday, 25 September 2015 21:53

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New Parents Connecting

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Where can I connect with other families and the larger Down syndrome community?

As new parents learning that our child had Down syndrome, the overwhelmingly common question that we all asked was “What will life be like?”. Of course, no one can ever answer that question completely, but connecting with other families living with Down syndrome is often the beginning of feeling positive about the future.

Many new parents voice a need to connect (both figuratively and literally) to other families who have a child or loved one with Down syndrome. Indeed, many of us cite a connection with peers and a wider community as a key factor in coming to terms with our child’s diagnosis. While we could never possibly have a complete list of places where you can find peers, read and share stories and generally connect with others who understand what you’re going through, we hope these ideas will be helpful to you and your family.


New Parent Videos

Books for Siblings

Books for Parents


Social Media (there is a seemingly unending list of resources out there!)

a. Facebook pages & groups (this is a sampling, there are many more!)

1. Down syndrome Association of Toronto (DSAT)

2. TwentyONEderful

3. Circle 21

4. DS Durham Moms

5. Trisomy Nutrition & Supplementation

6. Down syndrome Speech & Language Therapy

7. Babies born in (year) Rockin DS

8. Down syndrome Advocates and Supporters

9. Down syndrome Research and Treatment Foundation (DSRTF) now called Down syndrome Cognition Research Foundation – Lumind

10. Down syndrome parenting tips

11. World Down syndrome Day

12. Down Syndrome Diagnosis Network (DSDN)

b. Twitter (many of the blogs in the next section also have Twitter accounts)

1. Circle 21


c. Blogs

1. Happy Soul Project

2. Down wit Dat

3. Pudge & Biggs

4. Noah’s Dad

5. Sipping Lemonade

6. With a Little Moxie

7. DS blogs

Face to Face groups

Connecting directly with another parent (via email, phone or in person)

Last Updated on Friday, 25 September 2015 21:49

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PO Box 40039
Liberty Village PO
Toronto ON M5V 0K7

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11888 7942 RR0001

Established in 1987

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