Receiving an Adverse Prenatal Diagnosis

If you have recently received an adverse prenatal diagnosis for your unborn baby, it is likely you are feeling fearful and confused. It is possible that you have already been counseled to terminate your pregnancy and you are wondering if this is what you should do.

As a parent of a potential special needs child, please know that you are not alone. Many parents have been in the place you are now, and many are there now to help you deal with your fears and questions. Please do not make a hasty decision to terminate, a decision which may leave you with memories you may not want to remember later in life.

 

Also please note that some of the prenatal screening tests are inaccurate. As a result, some babies will be born healthy even if the prenatal test reveals that your unborn baby has a specific problem. Furthermore, some prenatal screening tests can only reveal the possibility of a problem and do not give an exact diagnosis or degree of severity.

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If you are struggling with an adverse prenatal diagnosis, the information in this article is presented especially with you in mind. It contains information about resources and support groups that are available to help you understand the special needs of your baby and the support that is there for you.

General resources:

Canadian Directory of Genetic Support Groups

Focus on the Family Canada 
(Mailing Address) 
PO Box 9800 Stn Terminal 
Vancouver, BC
V6B 4G3

 

(Street address)
200-20486 64th Ave. 
Langley, BC 
V2Y 2V5 
(800) 661-9800 or (604) 539-7900 
http://www.fotf.ca/

Down Syndrome

Down Syndrome, caused by the presence of an extra chromosome, is one of the most common forms of genetic birth defects, with approximately one in every 800 to 1,000 babies being affected. Birth defects include mild to severe mental retardation, possible heart defects, characteristic facial features and other possible health problems.

Due to medical technology, intervention programs, support groups and other programs, people with Down Syndrome are living longer, are becoming more integrated into the community, and are able to enjoy fuller and more active lives.

Prenatal screening for Down Syndrome gives an inaccurate result 20-40 percent of the time. A recent study reported women are often not given proper information or counseling on Down Syndrome or parent support groups.

Canadian Down Syndrome Society pannel_1
811 -14 Street NW
Calgary, Alberta 
T2N 2A4 
(800) 883-5608 or (403) 270-8500 
http://www.cdss.ca/

Down Syndrome Research Foundation 
1409 Sperling Avenue
Burnaby, BC 
V5B 4J8 
(888) 464-3773 or (604) 444-3773 
http://www.dsrf.org/

Spina Bifida

Spina Bifida is the most common of a group of birth defects called neural tube defects (NTDs). The neural tube is the structure in the unborn baby that later develops into the brain and spinal cord. It affects one in every 2,000 babies each year. There are three forms of spina bifida: occulta, meningoele, myelomeningocele. The most severe form, myelomeningocele, requires surgery  as soon as possible after birth, while the least severe form usually requires no treatment.

Spina Bifida Association of Canada 
#977-167 Lombard Avenue 
Winnipeg, Manitoba 
R3b 0v3 
(800) 565-9488 or (204) 925-3650 
http://www.sbhac.ca/

Cystic Fibrosis

Cystic Fibrosis (CF) is an inherited disease that is caused by an abnormal protein that does not allow the passage of chloride in or out of certain cells producing mucus, thus affecting a person's breathing and digestion. The severity of CF varies. Most CF individuals develop lung infections, have digestive problems, cough, and wheeze.

Canadian Cystic Fibrosis Foundation 
2221 Yonge Street, Suite 601 
Toronto, Ontario 
M2S 2B4 
http://www.ccff.ca/

 

Congenital Heart Defects

Congenital heart defects affect one out of every 125 to 150 babies born each year in the United States. The severity of the defect varies, thus the symptoms vary from child to child. Due to advances in technology, diagnosis, and treatment, survival of children with more serious heart defects has greatly increased.

University of Ottawa Heart Institute 
40 Ruskin Street 
Ottawa, Ontario, Canada K1Y 4W7 
http://www.ottawaheart.ca/ 
(613) 761-5000 
(Fax) 613-761-5323

 

Sickle Cell Disease

Sickle Cell disease is an inherited disease and is caused by abnormal hemoglobin, which is the main protein inside the red blood cells that carries oxyhen from the lungs and takes it to every part of the body. The effects of sickle cell disease vary; some common problems include infections, vision problems, pain episodes, swelling and strokes.

The Sickle Cell Association of Ontario 
3199 Bathurst St., Suite 202 
Toronto, Ontario 
M6A 2B2 
(416) 798-2855 
This email address is being protected from spambots. You need JavaScript enabled to view it.

Sickle Cell Foundation of Alberta 
P.O. Box 55041 
New Knottwood 
1704 Millwoods Rd SW 
Edmonton, Alberta 
T6K 3N0 
(780) 450-4943 
This email address is being protected from spambots. You need JavaScript enabled to view it.

Chromosomal abnormalities

Approximately one in every 200 infants is born with some sort of a chromosomal abnormality, such as Down Syndrome, Turner's syndrome, Trisomy 18, and Trisomy 13. A baby can be born with either too few or too many chromosomes, or chromosomes broken or rearranged. The result of chromosomal abnormalities varies, from mild to severe birth defects.

Chromosome 22 Central Inc.
Stephanie St-Pierre 
237 Kent Avenue, 
Timmins, Ontario 
P4N 3C2 
(705) 268-3099 
This email address is being protected from spambots. You need JavaScript enabled to view it." style="margin: 0px; padding: 0px 0px 5px; color: #003366; font-size: 1em;">This email address is being protected from spambots. You need JavaScript enabled to view it. 

Fetal Alcohol Syndrome (FAS)

Fetal Alcohol Syndrome (FAS) is a set of birth defects and mental disabilities that result from a woman drinking alcohol during her pregnancy. These birth defects many result in brain damage, facial deformities, heart, liver and kidney defects, vision and/or hearing problems, difficulties focusing and learning, and emotional and behavioral disabilities.

FASlink 
2448 Hamilton Road 
Bright's Grove, Ontario 
N0N 1C0 
(519) 869-8026 
This email address is being protected from spambots. You need JavaScript enabled to view it.

Fagile X Syndrome

michael_2Fragile X is the most common form of mental impairment. It is a genetic disorder caused by an abnormality in a gene located on the X chromosome. Females are less often affected (one in 8000) than males (one in 4000). Females have two X chromosomes; if one X chromosome is affected, she has another X chromosome with the normal gene. A person with Fragile X has varying degrees of mental impairments, learning disabilities, or emotional and behavioral problems. Males tend to have more severe symptoms than females. Most children do not have severe medical problems. There is no cure but there are treatmenst that allow children with Fragile X to life a life full of promise and hope.

While prenatal tests can determine whether a child has Fragile X, these tests cannot determine whether a child will have any mental impairment.

Fragile X Research Foundation of Canada 
167 Queen St. W. 
Brampton, Ontario 
L6Y 1M5 
(905) 453-9366 
http://www.fragile-x.ca/

Adapted from Oregon Right to Life resources, with permission.

Published in Pre-Natal Screening