Children Born as Amputees from Amniotic Band Syndrome - Research Paper Example

?Children born as Amputees from amniotic band syndrome Introduction Children who suffer congenital limb deficiencies, born as amputees from amniotic band syndrome feel quite different from their peers. Such children are likely to grieve for not having normal limbs. Children born as amputees from amniotic band syndrome need to make a lot of body (physical) and feelings (emotional) adjustments to their body changes. The physical adjustment usually depend on how and where high amputation is, while emotional adjustments may actually vary from one child to another and do not always keep with the context of amputation. This is a condition referred to as congenital amputation1. This paper seeks to discuss two main subjects: children born with one or more amputated limbs either from a clot of blood during early pregnancy or amniotic band syndrome; and prosthetics. Congenital disorder is a congenital amputation that is caused by fibrous bands of the amnion which is responsible for constructing fetal limbs to an extent that they fall off because of the missing supply of blood. Amelia is a child born without parts of limbs or one or more limbs. This makes congenital amputation the absence of part of a limb or total absence of a limb at birth. There exist various types of congenital birth amputation defects. A child with a congenital disorder may be missing just a portion of a limb or an entire limb. A complete absence of a limb at birth that leaves a stump is referred to as a melia, or a transverse deficiency2. In situations where portion of a limb is missing at birth, for instance, the fibula bone in the lower leg is entirely missing while the rest is intact, then this is referred to as longitudinal deficiency. There can be situations where only mid limb portions are missing, for example when the feet or hands are directly attached to the trunk; this is referred to as phocomelia. Several questions have been raised as to the possible causes of congenital amputation. Research indicates that congenital amputation may be a result of fibrous band constriction in the membrane that is surrounding fetus which is in the process of development (amniotic band syndrome). Other possible causes include lack of sufficient blood flow, exposure to teratogenic agents, substances that cause birth defects, and genetic factors3. Studies have also documented the demographics of congenital amputation. Evidence shows that one in every 2000 babies is born with a part or all limbs missing. This includes all things ranging from missing parts of limbs such as fingers to the total absence of both legs and both arms. Congenital is reportedly least common type of amputation. Congenital amputation has however in history reported to have increased. For example 1960 when many pregnant women received thalidomide drug contained in tranquilizers. The result was a tragedy of the thalidomide. This saw many babies born with missing and deformed limbs4. This particular case showed birth defects presented as deformed small version of the normal limbs. Another subsequent case was seen in the birth defects that resulted from Agent Orange exposure, the defoliant of the United States used in Vietnam, as well as the exposure to the radiation near the Chernobyl disaster site in Russia which left many children with absent limbs and malformed limbs. As mentioned earlier, the specific causes of congenital amputation (absence of part or entire limbs in children at birth) are unknown. The condition has been associated with a clot of blood during early pregnancy or amniotic band syndrome. According to most studies, majority of birth defects are associated with one or more environmental factors or one or more genetic factors. However, what exactly these factors are is not quoted, they are probably not easy to pinpoint. In addition, evidence shows that most of the defects at birth occur within the first 3 months of women pregnancy during the formation of the organs of fetus5. Within the critical first weeks of pregnancy, especially before a woman is aware she is pregnant; the fetus in development process is very susceptible to teratogen agents (elements that may cause birth defects). Extreme exposure to these teratogen agents may result into congenital amputation. As mentioned their earlier, missing limbs at birth (congenital amputation) may be as a result of genetic factors. In other cases, there might be a constriction of tight amniotic bands in the development of the fetus; this prevents a limb from properly forming. In most studies, it is estimated that amniotic band syndrome takes place between one in 15000 and one in 12000 live births. In most cases, what makes amniotic bands behave this way remains a mystery and is unknown6. In reference to the above paragraph, we can therefore infer that congenital amputation is caused by amniotic band syndrome occurring when (amnion) the fetal inner membrane raptures with no particular injury to the chorion (outer fetal membrane). From this, fibrous bands from the raptured inner fetal membrane (amnion) float in the amniotic fluid and get ensnared with the fetus and reduce the supply of blood to the limbs that are in the process of development to an extent in which the limbs are strangled, killing the tissues and then get absorbed within the amniotic fluid. However, the causes of amnion raptures may be the original source of the congenital amputation. Some of the identified causes of amnion ruptures include: infections; teratogenic drugs such as environmental chemicals and thalidomide causing phocomelia; metabolic imbalance; ionizing radiation such as radioiodine, atomic weapons and radiation therapy; and trauma7. When should pregnant women then seek medical attention? Women need to have a contact with a doctor at an earliest stage possible to avoid further defects. Most of the congenital amputations are not noticed up to after the birth of a child. At this particular time, the medical professional in charge of the delivery may provide the parents with relevant resources and ask them to visit proper medical professions in order to commence discussion of possible treatment directions and to effectively help the parents cope well with the situation8. In cases where deformation or abnormality is discovered at birth, the health professional (obstetrician) may assist the parents in making decisions of what kind of steps to take and the parents in question may begin to make plans of meeting special needs of their unborn child. But how is congenital amputation diagnosed at an earlier stage? The use of ultrasound examinations may aid in revealing the absence of parts or entire limb in a developing fetus. Routine ultrasounds may however not track signs of many other subtle defects. In case a doctor suspects risk of limb deficiency in a developing fetus, then a more advanced examination by ultrasound may be carried out. For example if the mother was already exposed to radiation9. The diagnosis of congenital amputation requires an early treatment. In situations where a problem with the constriction of amniotic band is discovered earlier enough, there is a likelihood of correcting the bands before any significant damage to the development of the limb. For example, there are multiple cases where physicians discovered the constriction of amniotic band and carried out a reduced invasive surgery freeing the amniotic band constriction and conserved the limbs affected. The procedure is not commonly available. A successful and effective treatment of a child with a missing limb at birth (congenital amputation) entails a whole medical team that includes an orthopedist, a pediatrician, a psychologist, a psychiatrist, a social worker, a prosthesist (expert in prosthetics), and physical and occupational therapists. There is however a debate which has made fitting a child early with a functional prosthesis a controversial issue. Some of the many experts assert that this results into ales wasting away (atrophy) and a more usual development of muscles of the limbs10. Some physicians and parents however believe that children need to learn to play on their own and perform tasks independently without prosthesis. This thoughtfully assists children in developing their own positive self reputation since it reinforces not the idea that such children are missing a limb that need to be substituted. In addition, majority of children resist prosthetic devices and reject wearing them. Children can at a later age, when they are older be involved in making informed decisions with respect to whether to wear a prosthesis. Fetal surgery is recommended for treatment of congenital amputation in some cases when diagnosed in utero in order to save a limb in danger of amputation11. The prognosis of congenital amputation has a weighty impact on the child’s life as well as that of the parents. Evidence shows that children are good extraordinarily at learning to achieve tasks through the use of the available means to them and finding means to have their disability compensated. Parents can therefore assist their children through encouraging determination and persistence, giving the children opportunity to carry out normal activities for themselves, and not doing such day to day life activities for them out of frustration. Occupational and physical therapy can assist the child to learn to achieve tasks which are more complex if children encounter impossibilities. Prosthetic devices are also becoming sophisticated increasingly. However, some prosthesis experts believe that when prosthesis is fixed at an earlier stage, the acceptance of the prosthesis by children as well as acceptance by the parents is highly enhanced12. The difficulties and trauma coming with congenital amputation has resulted into multiple researches on how to prevent the condition. However, there is no particular known means of preventing congenital amputation. The prevention of general birth defects begins with the general well being of the mother during and even before the pregnancy. Care from the parents need to be comprehensive and clear, so that the mother becomes aware of both her environmental risks and genetic risks. Many disciplines in alternative therapy suggest different vitamins and supplements reducing likelihoods of birth defects. Evidence shows that supplements such as multivitamin like folic acid can minimize birth defects, congenital abnormalities included. Drinking alcohol, smoking, using drugs not prescribed by doctor, using recreational drugs, and having unbalanced diet during pregnancy are some of the aspects that increase the risk of birth defects including congenital abnormalities. Day to day, extreme exposure to chemicals is dangerous to women in gestation13. Congenital amputation has raised many concerns from parents. Raising children with one or more missing limbs can be very challenging. The manner in which children do think of themselves is wholly dependent on how their parents treat them and the way in which such children are introduced to others by their parents. Parents should therefore be keen and extremely careful to treat such children as they do to the others and not to have less or more expectations from them14. As mentioned earlier, children with missing limbs (congenital amputation) are extra ordinarily good at compensating for their disability. These children are not disabled mentally in any particular way, and therefore nothing less should be expected from them in a setting of education as a result of their disability. This is because reduced expectation may lead to a detrimental impact on the self image of such children. In addition, parents should be very keen on how they respond to comments and answer questions about the disability of their children when such children are present. They should keep in mind always that the children may hear their responses and comments. The manner in which parents feel concerning the disability of their children have a very strong effect on how such children feel about their own disability and their self image15. Summarily, there are classifications of congenital amputation. Much of the language that is used for illustrating conditions of congenital amputation predates mapping of the genomes, and structural conditions are normally considered differently from the other congenital amputation. Today, it is known that most of the metabolic conditions can have subtle structural conditions and structural expression normally has links to the genetics. In addition, congenital amputations are still classified on structural basis and organized by the major organs that are affected. Prosthetics are artificial devices that substitute the missing limbs. This is a field of biomechanics, using mechanical devices to support human skeleton, muscle, and nervous system in order to enhance control by motor that is lost by defect, trauma or disease. Generally, prostheses are used to supplement defective parts of the body or as substitutes of missing parts of the body from birth (congenital)16. As mentioned earlier, the use of prostheses has become a controversial issue due to the hot debates rising from their use with children at an early age. Some of experts argue that the use of prostheses results into a less wasting away (atrophy) and a more usual development of muscles of the limbs. Most of the physicians and parents also believe that children need to learn to play on their own and perform tasks independently without prosthesis17. This is because learning by self thoughtfully assists children in developing their own positive self reputation since it reinforces not the idea that such children are missing a limb that need to be substituted. In addition, majority of children resist prosthetic devices and reject wearing them, therefore prostheses are not generally recommended for use by children at early ages18. This is because children with congenital amputation are extra ordinarily and remarkably good at compensating for their disability, and therefore will always find away to cope with their situations. These children are not mentally disabled in any particular way, and therefore nothing less should be expected from them in a setting of school or educational learning because of their disability. It is important to note that minimal expectation may lead to a detrimental impact on the self image of congenital amputated children19. Therefore the use of prostheses may lead to low self image and detrimental impact on children with congenital amputation. In addition, parents should be very keen on how they respond to comments and answer questions about the disability of their children, their remarks matter a lot to the children as their parents remain their only support. Parents should therefore always keep in mind that the children may hear their responses and comments. Using prostheses among children at early ages with congenital amputation have a very strong effect on how such children feel about their own disability and their self image20. Conclusion In summary, there are various types of prostheses depending on what part of the body it replaces: transfemoral prosthesis replacing a leg missing above the knee; transradial prosthesis replacing an arm below the elbow; transhumeral prosthesis replacing a missing arm above the elbow; and transbial replacing missing leg below the knee. Children should be exposed to programs such as Limb Loss Education & Awareness program instead of prostheses to help support them. Such programs generally help children with congenital amputation. They come to learn and identify their own attributes and strengths, understand that individuals are alike and not different, build appreciation for accomplishments and strengths of other people, become aware of how the missing limb affects them and how they can cope with the situation, and explore the nature and interdependence of helping relationships21. This paper has generally discussed the congenital amputation and prosthetics. List of references Edelstein, J. E. “Prosthetic feet”. State of the Art. Physical Therapy 68(12) (2008): 1874-1881. Gabos PG. “Modified technique for the surgical treatment of congenital constriction bands of the arms and legs of infants and children”: Orthopedics. (2006); 29 (5):401-4 Gailey, Robert. The Biomechanics of Amputee Running. (New York: SAGE, 2007), 21-41. Hafner, B. et al. “Transtibial energy-storage-and-return prosthetic devices: A review of energy concepts and a proposed nomenclature”. Journal of Rehabilitation Research and Development Vol. 39, No. 1 (2008): 1-11. Klein et al., eds. Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew. (New York: McGraw-Hill, 2004), 15-27. Light TR, Ogden JA. “Congenital constriction band syndrome. Pathophysiology and treatment” Yale J Biol Med. (2003); 66(3):143-155 Murdoch, George; A. Bennett Wilson, Jr. A Primer on Amputations and Artificial Limbs. (United States of America: Charles C Thomas Publisher, Ltd., 2007) pp. 3–31 Smith et al. eds. Atlas of Amputations and Limb Deficiencies: Surgical, Prosthetic, and Rehabilitation Principles. (Rosemont, IL: American Academy of Orthopedic Surgeons, 2004), 25-31 Walter JH et al., “Amniotic band syndrome”: J Foot Ankle Surg. (2008); 37(4):325-333 Read More