First steps to take if your baby has Down syndrome

If you’re expecting a baby who has been diagnosed with Down syndrome, you may have many questions and concerns.

While this diagnosis may seem overwhelming, there is no need for panic – or despair. Although having Down syndrome means your baby will face challenges, many people with Down syndrome live full, productive, happy lives.

The most important thing you can do is educate yourself about the resources and support available to you and your family so that you can become your baby’s best advocate. Traci Brewer, executive director of the Down Syndrome Association of Central Kentucky (DSACK), offers these tips:

Your baby’s health. Children born with Down syndrome have a higher rate of heart abnormalities and other medical concerns than the general population. Your first step is to ensure that medical professionals are following the healthcare guidelines recommended by the National Down Syndrome Society. Your obstetrician and later your pediatrician may not have a great deal of experience with children with Down, so it is up to you to advocate for screenings at birth to rule out potential health risks. If you need help making a case for these screenings, enlist the aid of a genetic counselor.

Early intervention. Federal law mandates that states must provide early intervention for children with certain conditions, and Down syndrome qualifies. In Kentucky, this program is called First Steps. First Steps provides therapists such as speech-language pathologists, occupational therapists and physical therapists that will come to your home for therapy sessions. Make sure your hospital or pediatrician makes a referral to First Steps before you leave the hospital.

Fear. It’s normal to feel scared, but know that you are not alone. Try to relax, get to know your baby and enjoy your time together. Realize that many of your struggles are the same as those faced by any new parent. Statistics have shown that married couples with children who have Down syndrome have a lower rate of divorce than the general population, and siblings are often more compassionate and well-adjusted because of their relationship with their brother or sister with Down syndrome.

Get connected. The best resource for new parents will always be other parents. Many organizations offer free resources and lists of local parent groups. Locally, the Down Syndrome Association of Central Kentucky hosts new parent dinners, coffee chats, special events and much more to help parents connect with other parents of children with Down syndrome. DSACK can be found on the web at www.dsack.org.

Take it one day at a time. Stay informed, get connected and remember that you are doing your best. You don’t have to be a superhero, and just like other parents, you will make the best decisions you can. Love your children and try to keep everything in balance. Know that the positives far outweigh the negatives. People with Down syndrome go to school, have meaningful jobs and make significant contributions to society.


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