“The biggest thing when it comes to a diagnosis of Down Syndrome is to prepare the mother and father and other children in the house emotionally for a child with special needs,” said Dr. Davidson Freeman, a pediatrician at the Children’s Hospital of Georgia.
Whether a child is diagnosed with Down Syndrome when the mother was pregnant or at birth, parents can expect to feel so many things: joy for their new baby, sadness or anger at the diagnosis, uncertainty about what to do next, and also fear for the future their baby will have.
At the beginning, small steps are important.
Get emotional support. A diagnosis of Down Syndrome can come as a shock. So talk to experts—and not just physicians or nurses. Talk to your tribe, and get connected with families of other children with Down Syndrome. They can literally “talk you down” from your fears and give you an idea of what to expect, better than anyone else. Launched by a local pediatrician, The Upside of Downs is an Augusta-area group that offers support for parents. And for children 7 to 18, Camp IVEY (Inspiring Very Exceptional Youth) offers a week-long, spend-the-night camp for children with Down Syndrome and other developmental delays.
Find a doctor. Children’s hospitals, like the Children’s Hospital of Georgia, typically offer a developmental pediatrician who takes care of children with special needs. So consider getting a referral. Or, your general pediatrician may be a great choice to care for your child.
Know the expectations, but don’t be limited by them. “Your child will likely reach milestones later, like crawling, walking and potty training. And there will be frustrating times, as with any child,” said Freeman. There’s no easy way to predict whether your baby will be mildly or severely affected by Down Syndrome, but what you can do is work with your pediatrician and specialists, who can tell you what to expect and what you can do to help make sure your baby is set up for success, from day one.
Start with feeding. One of the first things any parent does is feed their new baby. Babies with Down Syndrome can breastfeed, but there could be challenges since these babies often have decreased muscle tone. This means that it can be hard for them to suck, breathe and swallow in a coordinated way. “Speech-pathology can be a great help with feeding issues,” said Freeman. “Special nipples for bottle feeding can also help this process. But know that in some cases, babies need to be tube fed, and some are born with stomach anomalies that need to be fixed by surgery.”
Build those muscles. Low muscle tone also means that exercise is really important. Gently bicycle your child’s legs, move their arms, do tummy time as recommended and talk to your pediatrician about when to start physical therapy, which you can start as soon as when your child is 6 months old. Physical therapy will also help once your child is ready to crawl, then walk.
Read and talk to your baby. Expose your child to lots of words—that gives any child the best chance at developing good speech, say experts. So read several books throughout the day, including bedtime. Explain the pictures in the books so children start to learn connections between words and objects. As you go through your day with your baby, talk about what you’re doing. For example, “We’re going to go on a walk. Let’s put on your red coat and buckle you into your stroller. What do you see? There’s a tree and a bird.” You’ll feel like you’re narrating your life—and you will be—but it’s a great way to help boost speech and language understanding.
Find a pediatric dentist. Dental problems are common in children with Down Syndrome, so ask your pediatrician or friends early on for recommendations for a good pediatric dentist. You’ll want to schedule an appointment when your child is six months old but no later than one year old. “Look for someone who works with children with special needs and can offer in-office sedation as needed for procedures,” said Freeman.
Get to know the rest of your child’s medical team. Down Syndrome can come with other medical issues, including congenital heart defects, eye issues, hearing problems, spine problems and more. Your child’s medical team could include a pediatric cardiologist, pediatric endocrinologist, pediatric orthopedist, pediatric ophthalmologist, pediatric ENT and others.
Be prepared for the joy, too. “They don’t understand anything but love,” said Freeman, whose brother, Skeete, had Down Syndrome. “The ones that do best are loved. They just want to love and be loved. That’s all they understand.”