No matter when parents conceive, there is always a chance that baby may have Down syndrome, but the likelihood rises significantly with maternal age. So does the possibility of fertility problems. If aging parents do manage to conceive after many months or years of trying, the news can be thrilling. So the confusion, and anguish can be even more intense if the unborn child is diagnosed with Down syndrome.
Marla Murasko, author and owner of ExecuEssential Administrative Services, Inc. from Indiana experienced the frustrations of infertility treatments, the excitement of finally achieving a pregnancy (without them), and the devastating news that her unborn son would have Down syndrome as well as a life-threatening heart defect.
But through a good support network (that included her husband, family, medical personnel, and friends), meticulous preparation, and an unfaltering belief that children with severe disabilities have an important place in the world, this brave mother has become an advocate for her son Jacob, now 3, and for all children with Down syndrome.
How to Prepare for Baby with Down Syndrome
Murasko has some important suggestions for parents who are preparing for the birth of a Down syndrome baby:
- Secure a group of medical professionals that you trust.
- Set up an early intervention team including a good physical therapist. Research state programs that may help.
- Consult with doctors and specialists in order to understand Down syndrome and the issues that can arise at birth, and in the first months of the child’s life.
- Be prepared for some emotions after the birth. “I was afraid of Jacob at first because he was so fragile,” Murasko described.
- Keep in mind that the baby will need you and you will have to know how to take care of him.
Accepting the Parenting Challenges of Down Syndrome
Many health issues can arise for a baby with Down syndrome. These may include heart defects, developmental delays in speech and movement due to poor muscle tone, vision issues, hearing loss, and more frequent infections and illnesses. But one of the biggest concerns for parents may be that their child won't be able to do the things that other children can do. Murasko decided early on to adopt a can-do attitude for Jacob.
One way Murasko helps her son is to encourage him to try everything that he is interested in. “He participates in a music program, gymnastics, swimming, and preschool just like his peers,” she described.
Coping With Down Syndrome
In order to help get through her initial journey with Jacob, Murasko began to document her thoughts in a journal before he was born. She wrote down everything, including medical information about Jacob’s serious congenital heart defect. “It started out as a way to cope. It was very therapeutic for me. Then, I realized that the information I was writing might be valuable to others,” noted Murasko.
What resulted was Jacob’s Journal – My Journey Home [Lulu.com, 2007], a comprehensive and inspirational book for parents of infants with Down syndrome, offering a positive perspective on the disorder and her unending belief that any life is precious, and one to be celebrated. A unique twist to Jacob’s Journal that makes this book so endearing is that it is written from the point of view of the child.
No one can know for sure what the future may hold for a child with disabilities. Any child is capable of achieving great things in his lifetime. Marla Murasko points out to parents of children with DS, “The diagnosis of Down syndrome is not necessarily one of doom and gloom. The truth is that there are many beautiful, educated, and talented people with Down syndrome out there. One of them could be yours.”
Karen Plumley - Karen Plumley is a writer specializing in parenting and education. She works for Parenting NH and the Hippo, NH's most widely read ...
