Receiving a prenatal Down syndrome diagnosis can feel overwhelming. While most expectant parents worry about which breast pump to use and which diapers to buy, you will concentrate on what to expect when caring for a baby with Down syndrome.
First, repeat the Boy Scout motto,”Be Prepared,” to yourself about 10 to 20 times. This should become your family’s go-to saying and your key to gliding through the early months. Being prepared and knowing what to expect will give you the confidence you’ll need to parent a child with Down syndrome more easily.
Have you ever held a baby with Down syndrome before? If not, you have a lot to look forward to! Spending time with one of these little cherubs is such a special experience. According to the National Down Syndrome Society, babies with Down syndrome often share a specific and differentiated set of physical characteristics, which include:
- Almond-shaped eyes
- Small noses
- A round face with a slightly flat profile
- Hyperextending joints
- Muscle tone deficiency
- Larger gap in between the big toe and second toe
- A deep line down the center of the palm
Breast is best!
You may already know that breastfeeding can naturally improve your baby’s immune system, but it is especially important to infants with Down syndrome, who have higher rates of infections and respiratory disorders, such as asthma. According to the National Down Syndrome Society, breastfeeding can also help a baby with Downs by:
- Increasing muscle tone in the mouth and jaw that can later improve speech
- Increasing the development of neural connections in the brain by exposing the baby to skin-to-skin contact
- Improving digestion to help your baby’s body absorb more nutrients; Down syndrome babies generally experience bowel problems
Keep in mind, because babies with Down syndrome have low muscle tone, they may have extra difficulty latching on to the breast. They are also known to be sleepier than other babies, so you will need to work harder to keep your baby awake through an entire feeding.
Your Baby’s Health
The National Down Syndrome Society says babies with Down syndrome have an increased risk for having certain health conditions, so the sooner you can locate the right doctors and therapists, the better it will be for your child’s well-being. Health issues commonly associated with Down syndrome include respiratory difficulties, heart defects, digestive issues, hearing loss and vision problems. Not every child born with Down syndrome with have these health concerns, but if your baby does, seek out pediatric specialists who primarily work with children who have Down syndrome because they truly understand the condition. For example, pediatric physical therapists or sensory integration specialists can work with your child from the earliest months to help improve muscle tone, increase flexibility and decrease overstimulation that can often agitate children with sensory issues.
But what about the future?
People with Down syndrome have a greater quality of life and a longer life expectancy now, more than ever before in history. They can live fulfilled lives rich in social experiences, successful careers and even marriages. You will find, as most parents do, that your child will fill your life with compassion, patience, humor and more joy than you could ever imagine.
Some of my most special memories as a child were spending time with my Aunt Gina. Gina has Down syndrome, and although she’s about 20 years older than I am, we had quite a lot in common when I was a little girl. We both loved Barbie dolls and dressing up like princesses, which we would do for hours every time my family got together. As I got older, I eventually grew out of playing with Barbies and dressing up, but at more than 50 years of age, my Aunt Gina still loves to throw on her feather boa, toss on her bejeweled tiara and grace everyone in the room with her royal presence.
Growing up with Aunt Gina in my life was nothing short of a blessing. Sure, there were times when she would become frustrated or upset. But when I was a child, I had the rare and precious opportunity to watch everyone around me demonstrate a type of tenderness and patience with Gina that really showcased the beauty of the human spirit. Aunt Gina taught everyone in our family the meaning of compassion, self-sacrifice, loyalty and joy. So, if you’ve just found out that your baby will have Down syndrome, know that you and your family have been given a beautiful gift. Although you might have a different path than most parents, you will find that your journey will expand your heart in ways that you never imagined, and it will fill your life with immeasurable love and countless cherished memories.
To help you find your path, visit The National Down Syndrome Society’s website to find support or read advice from Dr. Sears about his personal experience raising a child with Down syndrome.