Spina Bifida - Tilted Forum Project Discussion Community

Daval · 07-26-2006, 05:43 AM

Well we got the dreaded call late last week. The standard blood tests came back showing that our baby is at a higher risk of having Spina Bifida. This does not mean our baby will have it, just that we are in the group that has a higher chance of it happening. Something like 1 in 120.

We were given an appointment with a Genetics Councellor and have an Ultrasound scheduled with the hospital to examine the spine of our baby who is due in mid December.

Has anyone been affected by this defect? It can have varying effects from severe mental and physical handicaps to minor effects. How has it affected you or your children, what are the challenges you have had to live with.

Has anyone chose to terminate a pregnancy because of this. As this is one of the options advised to us if the condition is confirmed.

Definitions and Descriptions
Spina Bifida

What is Spina Bifida? Spina bifida is a Latin term meaning 'open spine'. Medically it refers to a birth defect where the spine does not form completely . The spina bifida defect may leave several vertebrae deformed in such a way as to expose the spinal cord. The exposure of spinal cord usually results in some damage to it at the point of exposure. Damage at some point along the spinal cord results in limited brain signals to and from muscles and body organs below where the damage has occurred. Limited communication to and from the brain to muscles and body organs frequently results in reduced development of normal body function. Although spina bifida is originally a skeletal defect, there are a significant number of directly related conditions which precipitate from the defect in the spine. People who are born with spina bifida frequently have one or more related defects.

Spina bifida is considered a defect in the Neural Tube (NTD). This Neural Tube Defect occurs during the first four weeks of pregnancy, before a woman will be tested to confirm pregnancy. It is the early development of the defect which makes it both hard to treat and hard to detect prior to ultra-sound tests. The time the 1st ultra-sound is done at about 18 weeks. By this time, permanent damage is already done if a child has a major spina bifida type. Although spina bifida can be detected at the first ultra-sound, the extent of the damage cannot be determined until the child is born. In most cases, the doctor will give the most severe diagnosis attempting to prepare the family for the worst possible case because if the spina bifida is detected at the ultra-sound stage, the effects on a child will usually be significant. But, it is important to note that the effects from spina bifida are extremely varied. They range from severe physical deformation and developmental problems to minor bladder problems usually correctable by surgery. The most common effects are limited use of lower limbs, bowel and bladder limitations, and average mental capability. Spina bifida is usually accompanied by one or more other conditions.

maleficent · 07-26-2006, 06:13 AM

I have nothing substantial to contribute just good thoughts, warm wishes, prayers and blessings to you and your wife... If you are faced with making a decision that you make the best one for you at the time...

Daval · 07-26-2006, 07:18 AM

Thanks Mal

highthief · 07-26-2006, 08:39 AM

Hopefully it'll turn out OK - 1/120 is still "good" odds. I don't know what I'd do if we were to discover our child would be born with such an ailment, and not a choice I'd ever want to have to make.

Best wishes.

07-26-2006, 05:43 AM	#1 (permalink)
Daval Junkie Location: The True North Strong and Free!	Spina Bifida Well we got the dreaded call late last week. The standard blood tests came back showing that our baby is at a higher risk of having Spina Bifida. This does not mean our baby will have it, just that we are in the group that has a higher chance of it happening. Something like 1 in 120. We were given an appointment with a Genetics Councellor and have an Ultrasound scheduled with the hospital to examine the spine of our baby who is due in mid December. Has anyone been affected by this defect? It can have varying effects from severe mental and physical handicaps to minor effects. How has it affected you or your children, what are the challenges you have had to live with. Has anyone chose to terminate a pregnancy because of this. As this is one of the options advised to us if the condition is confirmed. Definitions and Descriptions Spina Bifida What is Spina Bifida? Spina bifida is a Latin term meaning 'open spine'. Medically it refers to a birth defect where the spine does not form completely . The spina bifida defect may leave several vertebrae deformed in such a way as to expose the spinal cord. The exposure of spinal cord usually results in some damage to it at the point of exposure. Damage at some point along the spinal cord results in limited brain signals to and from muscles and body organs below where the damage has occurred. Limited communication to and from the brain to muscles and body organs frequently results in reduced development of normal body function. Although spina bifida is originally a skeletal defect, there are a significant number of directly related conditions which precipitate from the defect in the spine. People who are born with spina bifida frequently have one or more related defects. Spina bifida is considered a defect in the Neural Tube (NTD). This Neural Tube Defect occurs during the first four weeks of pregnancy, before a woman will be tested to confirm pregnancy. It is the early development of the defect which makes it both hard to treat and hard to detect prior to ultra-sound tests. The time the 1st ultra-sound is done at about 18 weeks. By this time, permanent damage is already done if a child has a major spina bifida type. Although spina bifida can be detected at the first ultra-sound, the extent of the damage cannot be determined until the child is born. In most cases, the doctor will give the most severe diagnosis attempting to prepare the family for the worst possible case because if the spina bifida is detected at the ultra-sound stage, the effects on a child will usually be significant. But, it is important to note that the effects from spina bifida are extremely varied. They range from severe physical deformation and developmental problems to minor bladder problems usually correctable by surgery. The most common effects are limited use of lower limbs, bowel and bladder limitations, and average mental capability. Spina bifida is usually accompanied by one or more other conditions. __________________ "It is impossible to obtain a conviction for sodomy from an English jury. Half of them don't believe that it can physically be done, and the other half are doing it." Winston Churchill

07-26-2006, 06:13 AM	#2 (permalink)
maleficent Junkie Moderator Emeritus Location: Chicago	I have nothing substantial to contribute just good thoughts, warm wishes, prayers and blessings to you and your wife... If you are faced with making a decision that you make the best one for you at the time... __________________ Free your heart from hatred. Free your mind from worries. Live simply. Give more. Expect less.

07-26-2006, 07:18 AM	#3 (permalink)
Daval Junkie Location: The True North Strong and Free!	Thanks Mal __________________ "It is impossible to obtain a conviction for sodomy from an English jury. Half of them don't believe that it can physically be done, and the other half are doing it." Winston Churchill

07-26-2006, 08:39 AM	#4 (permalink)
highthief Junkie Location: Ontario, Canada	Hopefully it'll turn out OK - 1/120 is still "good" odds. I don't know what I'd do if we were to discover our child would be born with such an ailment, and not a choice I'd ever want to have to make. Best wishes. __________________ Si vis pacem parabellum.