Realising that your baby has Down Syndrome or will be born with the condition is overwhelming and can leave you struggling with uncertainty and confusion. It is hard to digest the fact that your baby’s disability could impact their normal course of lives.
Despite having down syndrome, many children continue to have normal lives under natural environments, receiving immense the care and compassion from the family members. With the medical advancements, we have developed a better understanding of the conditions—many support groups and societies now offer families and parents of children with Down syndrome much-needed help and direction.
All this along with a positive family environment and constant support can significantly improve their quality of life. As per the survey conducted by the Centers for Disease Control and Prevention, around 6000 babies are born in the US with Down syndrome, which equals to 1 in every 600 births.1
There has been a noticeable increase in the quality and the life expectancy of people with Down Syndrome. The mortality rate of people with Down syndrome increased from 25 years in 1983 to 49 years in 1997, which is an average increase of 1.7 years per year.2
Understanding Down Syndrome
Down syndrome happens when out of the 23 pairs of chromosome, the number 21 develops a glitch due to which instead of 2 copies, 3 copies of the chromosome are formed. The risks increase with an increase in maternal age, the rate is 1 in 350 at the age of 35 and 1 in 55 at the age of 55.3
Couples who already have a child with Down syndrome are more likely to have another child with Down syndrome as compared to other couples. However, it is a rare case (as rare as 1%)and parents are most likely to have children without the disability.
The condition can be detected during pregnancy while screening for fetal abnormalities at different stages of pregnancy.
Babies With Down Syndrome
If you are expecting a baby with Down syndrome and never met one, it is time you should plan to spend time with a child who has Down syndrome. Babies with Down syndrome share some common physical characteristics like slanted almond-shaped eyes, a small chin, single prominent crease in the palm, protruding tongue, joint flexibility, more space between big toes and second toe. As the child grows more symptoms start showing—a shorter neck, short stature, flatter and wider face.
Babies with Down syndrome experience slow development—ability to walk may get delayed until the age of 21 months instead of 14 months and speech therapy may be required.
Other health complications that come along with down syndrome include digestive issues, issues with hearing, and vision, heart defects—yet, not all children suffering from the condition develop these health issues. Each child is different and has a unique quality specific to their character trait.
They may be slow-paced, but children with down syndrome have the ability to learn. There are education programs for students with special needs. In the US, there are many adults with Down syndrome who are earning and living independently.
Parents Of Children With Down Syndrome
For a parent, it is not wrong to feel anger, frustration, and doubt. The risks of developing various health issues that could worry you. Don’t lose hope and accept it as an impossible challenge. When looking for support, the first place to start with is connecting with parents of other children who have Down syndrome. Communicating with other parents can make you look overlook the disability and enjoy the company of your little one.
There is always a local Down syndrome support group made by the parents of diagnosed children. Not only will they happily extend a helping hand, they will also be to understand your situation better and offer you mental and emotional support.
At first, gather as much knowledge as you can about Down syndrome and know how you can make your child’s life better. Maintain a record of the doctor appointments, medicines and therapy sessions.
There are a number of societies and programs to bring out the best in these special kids and help the parents and families understand the condition. Your pediatrician can also provide information about support groups present in your locality or city. National Down syndrome Society, National Down syndrome Congress, Center for Children with Special Needs are some of the well-known organizations in the US working towards providing better lives for people with special needs.
Nurture your baby with love and care. Significant improvement has been observed in kids and adults with Down syndrome who receive extra attention in the form of family support, proper education, social bonding, medical care and positive environment at home.
The progress may be slow and at times you may feel you are losing the battle—be patient with yourself. Find your own reliable support system while you are taking care of your child—don’t hesitate to ask for help. Develop a positive attitude, communicate with your family and value the time that you spend with your child. Remember that your kid is capable to become self-sufficient.
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