Finding out that your baby has Down Syndrome is wholly unexpected and coming to terms with this new information is an emotional process. You may have come across this page if you are looking for a cause, a reason, feel guilt or even blame yourself or someone else, that your baby has Down Syndrome. Trying to seek out answers to who, what, why or how your baby has Down Syndrome, is a futile search that will lead to more questions than answers. The truth is, is that science has no answers and no way to detect how your baby came to have Down Syndrome. Science only has possible reasons and whether these possible reasons apply to you, science does not even know. One needs to move on from fact-finding and information gathering to what is most important.
It is most important to know that: It is not your fault your baby has Down Syndrome. It is not anyone’s fault… and I will tell you why.
A Brief Biological Explanation
Typically when cells replicate, they replicate and sort into pairs. When this does not occur as intended, the 21st chromosome may be sorted into a triplet representation instead. The triplet representation of the 21st chromosome is called Trisomy 21. The expression of the triplet representation is called Down Syndrome. (To learn more about the use of the words Trisomy 21 versus Down Syndrome, click here).
The occurrence of this process is termed nondisjunction. Nondisjunction can occur during mitosis or meiosis. That means, Trisomy 21 can occur during the replication process of either the embryo, sperm, or egg (Standford Children’s Health, 2017. Retrieved February 24, 2017 from http://www.stanfordchildrens.org/en/topic/default?id=how-chromosome-abnormalities-happen-meiosis-mitosis-maternal-age-environment-90-P02126).
Whether it is the embryo, sperm, or egg that is the reason that nondisjunction occurs, does not change the end result. The result being that the embryo that goes on to develop into a fetus, which is your baby, will have Down Syndrome. This is the most common cause of Down Syndrome.
There is another cause where Down Syndrome is inherited but it is only responsible for 4% of cases (Translocation Down Syndrome). (National Down Syndrome Society, n.d., What is Down Syndrome? Retrieved February 24, 2017 from http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome).
There are three types of Down Syndrome: Trisomy 21, Mosaicism, and Translocation. (To learn more about the biological processes that lead to the formation of Trisomy 21, please visit ndss.org until DownRightCute creates a post about this).
As you can see above, learning more about the biological creative processes of Trisomy 21 that causes Down Syndrome to occur, is unable to give a clear indication of how your baby came to have Down Syndrome. Neither does it give you more information in order to move forward towards acceptance and reclaiming the joy you once had. To do this, you must acknowledge your feelings and learn more about what life is like for a person with Down Syndrome. Not the causes of Down Syndrome.
Feeling Sad? Its Normal. It Is Also Temporary.
The thoughts and feelings you are having are normal. It is normal to have sadness. It is normal to feel guilty. It is normal to have dark or negative feelings. You may be feeling so many emotions happening all at once, this too is normal. It can feel like you have just sunken to the bottom of the sea and cannot think because so much emotion is clouding your thoughts and judgement.
These thoughts and feelings although, they can feel like they just take hold of you, they eventually fade over time. You will realize that these thoughts and feelings are common. These thoughts and feelings do not define you as a person. These thoughts and feelings will not affect how you care for your baby or any baby. You are still the same person as you were before you found out that your baby has Down Syndrome.
How Good of a Parent Can I Be To A Child with Down Syndrome?
Parenting a child with Down Syndrome is an enriching, rewarding, and positive experience. Today, there are many supports available to parents, for their babies’ with Down Syndrome. A baby with Down Syndrome requires the same love, care, and attention as a baby without Down Syndrome.
Majority of parents overwhelmingly state that they are proud of their child with Down Syndrome and felt that their outlook on life is more positive because of their child with Down Syndrome. Interestingly, this positive perspective does not change despite the varying intellectual levels and needs of their child. Also, the perspectives of parents divorced were almost the same as those that were married. (Skotko, B.G., Levine, S.P., Goldstein, R. (October 2011). Having a son or daughter with Down Syndrome: Perspectives from mothers and fathers. American Journal of Medical Genetics, Part A: 155:2360-2369. doi:10.1002/ajmg.a.34293).
How Will A Sibling With Down Syndrome Affect My Other Children?
Majority of children of all ages who have a sibling with Down Syndrome expressed love and pride for them. The degree of health, education, medical or functional challenges that the sibling with Down Syndrome had, had no sway or effect on the feelings of love and pride for their sibling. This was the same irrespective of birth order, age difference, biological status of sibling, size of family or living situation of the sibling with Down Syndrome. Amazingly, as these siblings approached high school and beyond, they identified themselves as better people and felt they had learned important life lessons regardless of the range of challenges their sibling had. They stated they felt their perspective on life was enhanced and that they had a deeper appreciation for human variation (Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Having a brother or sister with Down Syndrome: Perspectives from siblings. American Journal of Medical Genetics, Part A: 155:2348-2359. doi:10.1002/ajmg.a.34228).
When siblings who had a brother or sister with Down Syndrome were asked to give any advice they had for expectant parents, the most popular response was, to convey the joys and rewards that would come with having a family member with Down Syndrome.
How Will A Child With Down Syndrome Affect My Relationship With My Partner?
Research shows that the divorce rates of those with a child who has Down Syndrome is no different than the general population. Even more, it is actually lower than the general population. Further, the divorce rates are lower when compared to other disabilities (Lederman, V.G., Alves, B., Maria, J., Schwartzman, J., D’ Antino, M.E., & Brunoni, D. (2015). Divorce in families of children with Down Syndrome or Rett Syndrome. Cien Saude Colet. 20(5):1363-9. doi: 10.1590/1413-81232015205.13932014).
There has never been a better time in history than now, to raise a child with Down Syndrome. There are more social, educational, and vocational supports and opportunities for people with Down Syndrome. The supports and resources today are more developed and numerous.
Will My Baby With Down Syndrome Be Happy? Will My Baby Have A Good Life?
A large majority of people with Down Syndrome state that they are living happy and fulfilling lives. They love their family and siblings, 99% and 97% respectively, and can make friends easily. More so, their perception of themselves as having a positive self-esteem and being happy was unrelated to their functional skills. That is, from low to high skills, all expressed similar levels of happiness despite having various levels of learning challenges. (Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Self-perceptions from People with Down Syndrome. American Journal of Medical Genetics, Part A. 155:2360-2369. doi: 10.1002/ajmg.a.34235)
A closer look at the statistics (Skotko, B.G., et al. (2011)):
- 99% of people with Down Syndrome indicated they were happy with their lives
- 97% liked who they are
- 96% liked how they looked
In the last 30 years of Down Syndrome, perceptions, treatment, and expectations have changed a lot. With this added change and positive support, people with Down Syndrome have been able to achieve much more than what has been achieved previously. A quick internet search will show people with Down Syndrome owning their own businesses, having jobs, living independently, learning two languages, getting married, going to college, being instructors, etc. Comparing the antiquated approach from years past, the outlook of Down Syndrome today is vastly different. This is not to say that every person with Down Syndrome will achieve these many things as there are an array of abilities and potentials. But the effort, time, patience, and support programs currently in place to help raise children with Down Syndrome has contributed to creating productive individuals that are capable of contributing to society. One can use the metaphor of a rainbow or fabric to describe the enhanced change of quality that varying abilities contribute to society. However the take-home piece is that when a society values difference, it makes for a more emphatic society that is more communicative and functions at a level where opportunities are not open only to a particular echelon of people, but where all people can blossom with less limitations to their growth regardless of their differences. Further, this benefits everyone.
***Read below for quotations from actual individuals with Down Syndrome***
Some Things That People With Down Syndrome Want to Communicate to New or Potential Parents (Skotko, B.G., et al. (2011))
About your baby with Down Syndrome:
- “If you love the baby with all your heart, that is what really matters”
- “The baby will bring you happiness”
- “Love them, and they will love you lots”
- “If everyone was as happy as me, that would be great”
- “It’s not so bad having Down syndrome”
- “I am very happy in my life. I have friends who care about and love me”
- “It’s okay to have special needs”
- “Don’t be sad. We can all learn”
- “Everything is going to be okay”
- “Don’t be afraid. Your baby will have a wonderful life”
Some had parenting tips:
- “Let the child have a dream and go for it”
- “You must give the baby more attention than your other children”
- “They need to give extra help for their child’s speech…be careful about heart problems…”
- “Treat them like a normal child”
- “…teach the baby sign language…travel with the baby…get the baby’s eyes checked…”
- “The baby has to work hard. Help the baby reach their goals”
- “If things come hard, don’t give up”
- “Be patient because I found out that it is harder for me to learn”
Some wanted to point out the similarities between those with and without Down Syndrome:
- “The baby is just like you and me, just a little different”
- “That the kid is not different from a regular person just because they have a disability”
Others encouraged parents to continue their pregnancies:
- “Take the baby home”
- “They should keep their kid”
- “You have a nice baby. Please take care of the baby”
(The quotations above have not been altered, so the language you are reading are from actual individuals, 12 years of age and up, that have Down Syndrome. It demonstrates language expression and what may be achievable. Interesting to note: the ability to use language does not equate to cognition or intellect. According to a Down Syndrome Clinic Nurse’s presentation I attended, one thing she said stands out for me. She said that intellectual delays in Down Syndrome are mostly mild to moderate delays. If you are going to put more attention and dollars to development, put that towards speech, she said. Because most people assume that people with Down Syndrome are more delayed than they actually are, which is incorrect. They are actually capable of much more than we give them credit for.)
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