New & Expectant Families
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.
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.
Members of the EDSS
The information below will provide you with the clinical guidelines for your baby.
Birth to 1 Month
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.
Medical: Neonatal (birth -1 month)
- 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.
- 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.
- Join a local Down syndrome parent group for family support
- Referrals to Homecare and Early Intervention
- Discuss child tax credit
- FSCD (family support for children with disabilities)