Congratulations! If you are about to bring a baby with Down syndrome into your family or have already welcomed a little one into your life, you know what an exciting and overwhelming time it can be.
The first thing you need to remember? You have a brand new baby to love! Give your wee one all the snuggles and attention you can muster, and try not to stress about what can seem like an overwhelming diagnosis.
Next, get educated. You may feel inundated with all the information that experts are throwing your way. If that’s the case, stop googling right now! But if you’re hungry for more—or looking for a quick guide that you can share with friends and family—start reading.
Down syndrome is a congenital condition that affects about one in 700 babies in Canada. In most Down syndrome cases, there is a third copy of chromosome 21 in every cell—a genetic variation called trisomy 21. Most babies are diagnosed after birth. But prenatal screening (via blood test, chorionic villus sampling or amniocentesis) may detect the presence of extra genetic material.
Truly, every baby is different and will have different abilities. Cognitive, motor, speech and language skills will develop at a delayed rate, but some children will experience only minor delays and others will be more significantly impacted. In terms of facial features and other physical characteristics, you can expect:
Whether your child receives a Down syndrome diagnosis prenatally or postnatally, it’s often surprising and sometimes difficult news. “There are some parents who are very welcoming,” says Nirit Bernhard, medical director of the Down Syndrome Clinic at The Hospital for Sick Children in Toronto.“They know other individuals with Down syndrome and are thrilled with the joy of having a child. Other parents struggle a little bit more.”
Just remember, whatever you feel is completely normal. Melody Jewitt, mother of two-year-old Myles, recalls the first weeks after she received her son’s diagnosis. “I think my biggest fear was wondering how people are going to look at us as a family,” she says. “Are people going to accept him? The fear is very raw. Before you have your own child in your arms, you’re focused on that label so distinctly. Once you can get past all those fears, you get to fall in love with your child.”
How you spread the news is completely up to you. Jewitt and her husband chose to tell their immediate family in person and sent letters to the rest of their loved ones. “It was one of the most useful things we did,” she remembers. “The focus of the letter was that we needed people to congratulate us and that ‘I’m sorry’ wasn’t part of it.” The last thing new parents need to hear is “I’m sorry” when they’re introducing their baby to the world. The Canadian Down Syndrome Society even created a whole campaign called Anything But Sorry to educate the public on why “sorry” is a dirty word.
If you’re craving information, try reading books like The Parent’s Guide to Down Syndrome and Early Communication Skills for Children with Down Syndrome. But if you decide to search blogs and social media, use caution. “You can come across things that are inspiring, but you might also come across difficult situations that don’t apply to you at all,” says Bernhard. “Understand that not everything is going to apply to your child.” That said, Jewitt enjoyed reading about the everyday lives of parents and their children with Down syndrome. “There’s so much comfort in finding others who are living their lives with so much joy,” she says. “That was one of the first things that made Myles’s diagnosis normal for me.”
As with neurotypical children, little ones with Down syndrome vary widely in their health and abilities. “Some babies will thrive and do really well,” says Susan Fawcett, director of therapy, behaviour and family support at the Down Syndrome Resource Foundation (DSRF). “Some will need a lot more help with feeding and sleep. But when kids with Down syndrome are really young, you often don’t see a big difference between them and typically developing babies.”
Still, there are a few things to watch out for.
Approximately 70 percent of newborns with Down syndrome are admitted to the neonatal intensive care unit because of health complications at birth, including feeding issues and breathing difficulties. During infancy, health issues can include cardiac defects that require monitoring or even surgery. Your baby will also need to be screened for sight and hearing impairments, hypothyroidism and an elevated white blood cell count. You may want to direct your primary care physician to the Canadian Health Watch Table or guidelines provided by the American Academy of Pediatrics, which are followed by the Down Syndrome Clinic at SickKids.
Your child will get all of the standard immunizations. In addition, they should receive the respiratory syncytial virus (RSV) vaccine, a type of virus that can strongly affect children with Down syndrome.
A high percentage of individuals with Down syndrome experience sleep apnea, which means that they stop breathing throughout the night. “These guys are already at a disadvantage, cognitively, and if you compound that with a lack of sleep throughout life, that’s not a good scenario,” says Fawcett. All kids with Down syndrome should get screened by age four.
“About half of infants with Down syndrome experience feeding problems that require some amount of tube feeding,” says Riley Rosebush, a speech-language pathologist at DSRF. Because of low muscle tone, many of these young children have difficulty managing food in their mouths and swallowing, though it’s difficult to identify just by observing their eating habits, she says. Some babies may require the help of an occupational therapist or a speech-language pathologist to learn proper coordination, while others may need a modified diet.
All areas of development will be a little or a lot delayed, including speech (actual sounds) and language (words and symbols). Fawcett recommends teaching sign language as early as possible to prevent some behavioural issues because they’ll be able to communicate what they want before they’re able to say it with their mouths. She also suggests booking an early consultation with a speech-language therapist to learn communication strategies and taking the It Takes Two to Talk program, which is offered around the world by The Hanen Centre for parents of children with language delays. “These kids learn much better visually,” says Fawcett. “You want to get right in their faces. They get a lot of information from facial expressions—that’s how they learn best. Books are also very important.”
All new parents need a support system, including parents of a newborn with Down syndrome. Let friends and family members step in to help so that you can make time for yourself and your partner, and don’t be afraid to ask them. Also, seek out support groups so that you can meet other parents who are experiencing the same joys and struggles and can give you a sense of what’s to come. “I think if you ask parents who have older kids with Down syndrome, the pervasive opinion is ‘I’m really happy with the kid I got,’” says Fawcett.
Now try to relax and just enjoy the first few months with your baby. If health, developmental or behavioural issues arise, you will learn to deal with them as they come. “When Myles was diagnosed, people told me that I was really brave, but it’s a false thought that this is an impossible lifestyle for anybody to manage,” says Jewitt. “I hope that people aren’t scared by medical jargon and their own personal fears that they’re not capable. I believe that the extra chromosome equates to extra everything: extra love, cuteness and joy. That’s what that chromosome creates.”