Are You at Risk for a Down Syndrome Child?

Are You at Risk for a Down Syndrome Child?

Growing up with a handicapped sibling has changed my life. Knowing the responsibility first hand of raising a disabled person, I certainly did not want to bring a child with a disability into this world. It has always been a concern of mine and has affected my decision on whether or not to have children.

Some disabilities can not be managed, such as Autism, Asperger’s syndrome and some forms of brain damage, but having a child with Down syndrome can be avoided. Down syndrome occurs in 1 out of 800 births each year and is the most frequent genetic cause of mild to moderate retardation. It involves an extra chromosome 21 (trisomy 21). Characteristics are associated with mental retardation, facial appearance and poor muscle tone.

Caused by a genetic condition related to chromosome 21, it is usually not inherited, but rather a result of a random event that occurs during the formation of the reproductive cells. Yet, there is one exception where Down syndrome is caused by balanced translocation, where material from chromosome 21 gets stuck to another chromosome, either prior to or at conception.

Balanced translocation can be inherited when one of the parents is a balanced carrier of the translocation. If a parent passes on this translocated chromosome, along with a normal chromosome 21, the child will develop Down syndrome. Not all parents of individuals with translocation trisomy 21 are themselves balanced carriers. Genetic testing can be sought to find the origin of the translocation.

With women waiting longer to have children, the risk of having a Down syndrome baby is a real concern. Age does play a role here in increasing the chances of having a Down syndrome child. Other risks include, already having a Down syndrome child and being a carrier of a balanced translocation.

The Down syndrome population is living much longer, with many reaching fifty years old and beyond. The responsibility of care is a life-changing experience for the entire family. Getting genetic testing is recommended for these high risk groups.

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  • Having a sibling with a disability does not give you cart blanche to be disparaging about others with disabilities.

    For instance, let's replace Down syndrome with Women. "Having grown up with 4 sisters, I know they can be more difficult to raise and they are more likely to has serious difficulties like teenage pregnancies. Additionally, they generally make less money as adults and are thus are economically less valuable....but this can be avoided by simply getting a gender test"

    My hyperbole is intentional, because as a father of a child with DS who is very in tuned with this community - I find these comments both offensive but even more importantly, not representative of the experience of "unsuspecting parent" such as myself.

    My child is not a sub-group of humans that need to be weeded out in some "genetic cleansing". For me, wIth the greater responsibility has also come greater rewards - much like the promotion I received at work. I am sorry your sibling made your life difficult, but as for the DS community - study after study finds families more uplifted than dragged down by the experience - and in fact families with a child with DS have lower divorce rates than those with just typical children.

    This article is helping push forward outdated and antiquated views - out of touch with the current generation.

  • In reply to brad12345:

    Brad, thanks for your comment. This blog is a forum for conversation on life with a disabled person. It is meant to encourage conversation and experiences raising a disabled child. I have been involved and continue to be active in
    this community through my sister and volunteering. I have worked with Down syndrome children and certainly value their contribution to society. The fact still remains is that raising a disabled child is a life-changing experience for the entire family and a responsibility that needs to be acknowledged. I am an advocate of prenatal testing for DS. It is a responsible choice for the unborn child and the family.

  • Counterpoints:

    Lower divorce rates:
    http://www.mc.vanderbilt.edu/reporter/index.html?ID=6087

    No difference in sibling competencies:
    http://www.down-syndrome.org/research-highlights/2043/

    94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another:
    http://www.ncbi.nlm.nih.gov/pubmed/21910244

    Dr. Skotko (Harvard trained doctor, and sibling) has toms of great research on the topic of siblings:
    http://brianskotko.com/publications

    But most telling is the studies that show siblings feelings mirror those of the adults and parents in their lives. Most parents of children with DS go through a mourning period but then see it as very positive experience once they have time to get over the shock and awe. A small percent of parents have a long difficult period - which usually seems to be due to parental ego from my experience (they feel people see them as something less for producing a "disabled" child).

    I understand your experience was difficult - but it is unfair to paint that experience as common. The data does not support it and vulnerable expecting parents could read this and mistake it for an accurate depiction of reality.

  • Brad, though I always appreciate feedback and your documented studies, the fact remains that having a disabled person in the family is complicated at best and life-changing for all. I have spoken to people my entire life with handicapped siblings and they all struggle with the ramifications of this event. Parents need to be responsible for their choice in having children. I firmly disagree with you. This is not a "fairy tale" existence living with a handicapped person. It is bitter-sweet one and to knowingly create this environment is not fair to anyone in the family.

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