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