Agnes and Esther are 2.5 year old twins who love dancing, playing with their four older sisters, climbing, applesauce, and making each other laugh. They also happen to have Trisomy 21. Trisomy 21, also known as Down syndrome, is the most common chromosomal condition, affecting approximately 1 in every 700 babies born in the United States (although twins with Down Syndrome are much more rare- less than one in a million!).
When I was pregnant with the twins, my husband and I received their diagnosis (through a prenatal blood test and amniocentesis). When we started telling people, many people replied in a sweet way "they are so lucky to have you"- but one individual told me "YOU are so lucky to have THEM".
After they were born, I began to understand what he said. The twins have given me an entirely new different view on life- a different lens by which to see through. I learned that I had many preconceived ideas about what individuals with Down Syndrome were capable of. The twins have taught me time and time again not to underestimate them.
Babies with Down syndrome, while facing certain developmental challenges, are capable of thriving and leading fulfilling lives. Early intervention programs, including physical, occupational, and speech therapy, play a crucial role in maximizing their potential.
With appropriate support and individualized education, many children with Down syndrome achieve significant milestones in language development, motor skills, and cognitive abilities. They often demonstrate exceptional social skills, empathy, and a joyful disposition.
Furthermore, advancements in medical care have significantly improved the health and lifespan of individuals with Down syndrome, allowing them to participate fully in family life, attend mainstream schools, pursue higher education, and engage in meaningful employment. The focus on their abilities and strengths, rather than limitations, is key to fostering their growth and well-being.
The twins have allowed us to become part of a special community. The Down Syndrome groups found on social media, and in our local area are truly amazing (Down Syndrome Alliance of the Midlands and the Down Syndrome Diagnosis Network are two groups we have been involved with). The people are supportive, knowledgeable, and passionate. It was almost overwhelming the baby gifts, validation, and kindness that we received when we first joined this "club"- a "club" I never expected to be a part of, but one that I am so grateful for.
Honestly, there have been struggles since the twins were born. Individuals with Down Syndrome are more prone to medical challenges (heart defects, vision problems, hearing loss, and digestive issues are common) . The twins started their journey in the Newborn ICU being born premature. Just before Agnes turned 4 months old, she needed open heart surgery. Soon after Agnes was discharged home, Esther was admitted to the Pediatric ICU with a viral infection. And currently we all have to keep two toddlers out of drawers and off of the dining room table.
However, the tough times have taught us adaptability, strength, patience, and gratitude. It has allowed us to connect on a deeper level with other individuals with some of the same struggles. It has forced us to lean harder into our faith. We have been able to meet healthcare professionals throughout the pregnancy and afterwards that have supported us and cared for our girls. Many of those healthcare providers have rejoiced with our wins, made medical decisions with us, and walked us through unknowns and concerns.
Having a child with additional needs really brings into perspective what is meaningful, what matters. It reset our focus on the important things in life. When I was pregnant, I worried about how the twins' diagnosis might affect our lives (especially their sisters'). When we told the older girls about the Down Syndrome diagnosis they didn't hesitate for a second. They loved their sisters unconditionally from the start. One of the greatest gifts I have been given is being able to watch their relationship- to watch their older sisters cheer them on, and to watch the joy and laughter that the twins bring their sisters as they dance in the living room or pretend to be scary bears. The diagnosis HAS changed us, but in a positive way- the twins have taught our family more about empathy, inclusion, and selflessness. It has given us more purpose.
Before the twins were born, I had a "clinical" picture of individuals with Down Syndrome. But they have allowed me to see the gift of difference and acceptance. The gift of community, perspective, and resilience. The gift of a different lens.
Don’t hesitate to discuss information about Trisomy 21 with your provider. You can ask about long-term prognosis, life expectancy, and the emotional and practical support systems available to your family. The more informed you are, the better equipped you will be to advocate for your child's needs.
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