MYELOMENINGOCELE: FUNCTIONALITY VS.

CONTRIBUTION 1

Myelomeningocele: Correlation Between Functionality and Contribution to Society

4641 words
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 2

Abstract

The following research paper works to determine if a correlation exists between functionality

and contribution to society, in regards to young adults living with myelomeningocele.

Myelomeningocele (MMC) is a birth defect that occurs when the vertebrae of the spine do not

form properly around the fetus' spinal cord, causing part of the spinal nerves to push out of the

spinal canal, often damaging the nerves. Those affected by MMC typically live a life of

disability and often are unable to walk or function on their own. The parents of those diagnosed

with MMC during pregnancy have to consider the quality of life their child will have, dependant

on two main characteristics: functionality and contribution. It is common to assume that one’s

disabilities are limiting to their capabilities and this research project works to determine the

validity of that assumption. The proposed methodology in this research project entails collecting

testimonials from those living with MMC and analyzing components of their functionality and

contribution levels to reach a conclusion. Based on the data collected, it was found that one’s

functionality does not correlate with their ability to contribute to society. The knowledge gained

from this research project could be used to assess other debilitating conditions and extend the

knowledge on the power of physical limitations.

MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 3

Myelomeningocele: Correlation Between Functionality and Contribution to Society

In the United States, the birth defect myelomeningocele occurs in 1 out of every 3000

live births (Committee on Obstetric Practice Society for Maternal–Fetal Medicine, 2017). This

malformation occurs when the vertebrae of the spine do not form properly around the fetus'

spinal cord (NICHD, 2017). Myelomeningocele (MMC) causes part of the spinal nerves to push

out of the spinal canal, often damaging the nerves. Those affected by MMC typically live a life

of disability and often are unable to walk or function on their own. Once diagnosed during

pregnancy, there are two treatment options: prenatal or postnatal treatment. Each treatment

option has its own benefits, however in recent years, further research has been done surrounding

prenatal treatment, showing it to have better outcomes than its predecessor. The Management of

Myelomeningocele Study (MOMS), done by the Children’s Hospital of Philadelphia, worked to

look into each treatment option, giving a detailed analysis of which one proved to be more

favorable in the interest of both the mother and the child (Adzick, et. al, 2011). In addition to

outcomes, each treatment option also comes with a price tag that parents must consider while

deciding which treatment option best suits them. Additionally, the parents of those diagnosed

with MMC have to consider the quality of life their child will have. Quality of life tends to

depend on two main characteristics: functionality and contribution. Functionality can entail

one’s ability to walk and care for themself while contribution can include one’s ability to hold a

job and participate in society. Although common belief says that one’s functionality should

reflect their ability to contribute, this may not always be the case. Furthermore, the following

question should be taken into consideration: is there any correlation between functionality and

contribution to society (for adults who suffer from myelomeningocele)?

MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 4

Myelomeningocele

Spina bifida is characterized by the incomplete development of the brain, spinal cord,

and/or meninges (the protective covering around the brain and spinal cord). Myelomeningocele

(MMC) is the most severe form of spina bifida which occurs when the spinal cord is exposed

through an opening in the spine, resulting in partial or complete paralysis of the parts of the body

below the spinal opening. Impairments range in severity depending on the location of the spinal

opening and can be so severe that the affected individual is unable to walk and may suffer from

renal and bowel dysfunction. Myelomeningocele generally involves a fluid-filled sac protruding

from the spinal canal. In other forms of spina bifida the sac may be covered by a thin layer of

skin, however in most cases of MMC, there is no layer of skin and abnormally developed spinal

cord tissue is usually exposed. Although the cause of MMC is not easily apparent, scientists

suspect that genetic, nutritional, and environmental factors may play a role (NINDS, 2013).

Complications associated with MMC range from minor physical problems with little

functional impairment to severe physical and mental disabilities. All nerves below the

malformation are affected to some degree, therefore, the higher the malformation occurs on the

spine, the greater the amount of nerve damage and loss of muscle function and sensation

(NINDS, 2013). Other complications associated with myelomeningocele include: little or no

feeling in the legs, feet, or arms, bladder or bowel problems, vision problems, a curve in their

spine (scoliosis), etc.

Another neurological complication associated with MMC is Chiari II malformation in

which the brainstem and the cerebellum protrude downward into the spinal canal or neck area.

This condition can lead to compression of the spinal cord and cause a variety of symptoms
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 5

including difficulties with feeding, swallowing, and breathing control, choking and

stiff/weakened upper arm function. Chiari II malformation may also result in a cerebrospinal

fluid (clear liquid that surrounds the brain and spinal cord) blockage, causing a condition called

hydrocephalus. Hydrocephalus is characterized by an abnormal buildup of cerebrospinal fluid in

and around the brain which puts damaging pressure on these structures. This condition is

commonly treated by surgical implanting a shunt (a hollow tube) in the brain to drain the excess

fluid into the abdomen. Children born with both MMC and hydrocephalus may have learning

disabilities, including difficulty paying attention, problems with language and reading

comprehension, and trouble learning math. When children with spina bifida get older they are at

risk to suffer from latex allergies, skin problems, gastrointestinal conditions, and depression

(NINDS, 2013).

Treatment

Knowing what myelomeningocele entails for those who suffer from it, treatment is a

pressing topic. When parents receive their child’s diagnosis during pregnancy, they are then

usually given a choice between prenatal or postnatal surgery/treatment. Parents must then weigh

their decision based on the benefits, risks, costs, and outcomes associated with each option.

Until recently, postnatal surgery and treatment has been the more common of the two

treatment options for myelomeningocele. This treatment option includes surgery shortly

following birth to close the spinal cord, later followed by shunt placement surgery, if needed, to

help drain fluid build up (hydrocephalus) from around the brain. Following these two

procedures, potential issues such as shunt infection, the need for assistive devices/wound care for

the non-ambulatory (defined by inability to walk), Chiari II malformation surgery, and treatment
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 6

for other complications is common. In addition, postnatal surgery almost guarantees a lifetime

of doctors visits, follow up examinations, and monitoring of the child’s developmental level and

treatment of physical, neurological and intellectual problems. This goes along with ongoing

treatments of orthopedic complications with physical therapy, urologic complications with

catheters, bowel complications with bowel training programs/high-fiber diet, and shunt

complications. Those who suffer from MMC tend to have low IQs due to inadequate

neurological development, only half of which are able to live independently as adults, even with

adapted accommodations. Most importantly, the emotional and financial impact of postnatal

treatment prove to have an enormous impact on the family and community due to long term

treatment costs (​Adzick, 2012).

Up and coming in recent years, prenatal treatment of MMC has become a more desirable

treatment option due to its more positive outcomes and reduced long term treatment. Prenatal

treatment of MMC includes, in utero interventional surgery during the second trimester of

pregnancy, shunt placement surgery (if needed), doctor visits and examinations, physical therapy

(if needed), etc. Otherwise, those who opt for the prenatal treatment option are likely to be free

from a lifetime of treatment. Those who undergo prenatal treatment of MMC usually are able to

gain almost full motor function, do not need a shunt, and are more neurologically developed than

those who undergo postnatal treatment. This is because, when a fetus is developing in utero, it is

impressionable and changes made during this development can significantly improve the health

of the fetus once delivered. However, anything that is treated after birth is past the window of

correction, and little can be done to reverse any ill effects of any disorders or malformations.

Therefore, treating MMC in utero allows the fetus to continue developing with a closed spinal
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 7

cord which increases the chances for the child to achieve almost normative standards of health.

These interventional methods can increase motor function, neurological development, decreased

change of hydrocephalus, among many other devastating factors of MMC. Despite these

favorable outcomes associated with prenatal treatment of MMC, there are also many risks

associated. These include, preterm labor and fetal and maternal complications such as, perinatal

death, pulmonary edema, oligohydramnios, placental abruption, chorioamniotic separation,

spontaneous membrane rupture, thin/dehiscence hysterotomy site, and transfusion at delivery.

Prenatal treatment also tends to be less expensive in the long term because it mainly consists of a

one time cost of the initial surgery rather than follow up surgeries and procedures associated with

postnatal treatment (Adzick, et. al, 2011).

Functionality and Contribution

In terms of functionality, it is observed that those who undergo prenatal treatment of

MMC tend to have higher levels of functionality such as being able to walk and having close to

normal renal function. On the other hand, those who undergo postnatal treatment of MMC tend

to be dependent on a wheelchair and/or catheter. ​ ​These levels of functionality can then be

applied to contribution to/in society in terms of looking at if they can hold a job, provide a

service, participate in certain aspects of society, etc.

One way to determine one’s level of functionality, especially in the case of MMC, is by

their ability to walk. Ambulation (the ability to walk or move from place to place) can be

divided into four functional levels: community ambulators, household ambulators,

non-functional ambulators, and non-ambulators. Community ambulators tend to walk indoors

and outdoors for most of their activities and may need crutches or braces, or both. They use a
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 8

wheelchair only for long trips out of the community. Household ambulators walk only indoors

with an apparatus and are able to get in and out of the chair and bed with little assistance. They

may use a wheelchair for some indoor activities at home and school, and for all activities in the

community. For non-functional ambulators, walking therapy sessions occur at home, at school,

or in the hospital. Afterwards, they use a wheelchair to get from place to place and to satisfy all

their needs for transportation. Finally, non-ambulators are wheelchair bound but usually can

transfer from chair to bed (Hoffer, 1973).

When considering how the terms of functionality relates to one’s contribution, the two

appear to go hand in hand, meaning a patient’s functionality level often reflects their ability to

contribute to society. If one is ambulatory, they are able to go out and participate in aspects of

society such as going to school, getting a job, and participating in community activities. If a

person with MMC is able to achieve a functionality level of community ambulator they

subsequently have the capacity to make contributions such as holding a job, paying taxes, and

enriching the community. On the other hand, those who are considered non-ambulators are not

able to care for themselves, which suggests they are unable to hold a job, and often require

continuous care, which puts a strain on taxpayers. Although the ‘facts’ lean in the directions

explained above, is this always the case?

Problem/Gap

Families with children diagnosed with myelomeningocele are faced with the decision of

the treatment methods they wish to pursue. In making this decision, parents must consider the

risks, outcomes, and costs all while considering the life of their unborn child. On top of that,

parents are faced with deciding their child’s quality of life based on their ability to function and
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 9

contribute in society. ​The purpose of the Management of Myelomeningocele Study was to

determine if prenatal surgery for MMC improved outcomes compared to postnatal surgery. The

outcomes of the study found that prenatal surgery contained many risks, however, proved to have

better functional outcomes for the child (Adzick, et. al, 2011). ​Regarding the information found

about patients with MMC in terms of their treatment routes along with the level of functionality

associated, it comes into question the contribution to society they may provide. This research

works to determine if one’s functionality correlates to their contribution to society.

Methods

Trying to measure correlation can be as simple as collecting data, getting numbers, and

analyzing for a connection. Although the technique is not overly complicated, it is often difficult

to get confidential information from doctors about their patients and/or difficult to get personal

and possibly sensitive information from those who suffer from MMC. Furthermore, a more

viable way to actuate the terms of correlation between functionality and contribution is to get a

generalized idea from the voluntary testimonials that many patients give about their experiences

with MMC. In said testimonials, patients can provide information about their day to day lives

-specifically pertaining to their levels of functionality and contribution- which can be used for

further analysis. It is hard to judge the real impact that functionality can have on a patient’s

ability to contribute if only numbers and statistics are used to define them, however, getting the

patient’s perspective makes things more clear. Additionally, patients have the ability to shield

their identities in testimonials like this and decide what types of information they feel

comfortable with sharing. By giving control of the limits of privacy to those it pertained to,

allowed for more ethical information sharing. Ultimately getting the perspective of those who
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 10

live everyday suffering from the effects of disorders such as MMC allows for an unclouded or

unbiased account of their realities.

As methodology for this research paper, testimonials were collected in order to compare

differing information regarding the patient’s functionality and contribution. Doctors of patients

with MMC are useful sources to find patients willing to give testimonials of their experiences.

During the course of this research paper, three doctors were contacted via email in regards to

gaining access to patients who may be willing to give their testimonials. Due to HIPAA laws

that prevent confidential information about patients to be shared by doctors, it can be suggested

that all identificatory characteristics of the patients are stripped from said testimonials. Names

and other personal information do not need to be included in order to get the results needed.

Helpful information to get in these testimonials -if the patient is willing- includes the following:

- Did the patient undergo prenatal or postnatal treatment?

- What was the condition of their spinal lesion?

- What was their initial prognosis/expected functionality?

- Did surgery improve such prognosis? Any other methods?

- How would they describe a normal day in their life?

- What limitations do they face in everyday life?

- How do they overcome such limitations?

- Are they ambulatory or in need of an ambulation assistance device?

- What are their living situations? Are the independent or need assistance?

- Are they able to hold a job or do they rely on other sources of income?

- What community activities do they regularly participate?

MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 11

Once having received a certain number of testimonials that the experimenter feels is

suitable for answering the question at hand, analysis can begin. In this case of this research

project, the Health Insurance Portability and Accountability Act (HIPAA) proved to be a major

limitation during data collection. ​After reaching out to three doctors within the field, regarding

the data needed ‒confidential patient testimonials regarding their overall functionality and

contribution‒ the responses elicited a less direct approach to gaining access to the data. Each

professional resource gave the same response, which reflected maintaining patient

confidentiality, due to HIPPA laws within the medical field, and suggested using consensually

published testimonials found online. Many online resources were provided and the data was able

to be collected by reading through testimonials that people had published on websites, sharing

their life story. Each story is unique, however, basic attributes of functionality and contribution

were observed within reading them. ​Since each testimonial differs in the amount of information

provided, format, and the patient’s willingness to share private information regarding their

health, analysis should be precise. In order to analyse each patient, certain characteristics should

be used to determine levels of functionality and contribution.

For the sake of this research paper, only ambulation was considered in terms of

determining the physical levels of functionality. This factor was chosen over others due to the

ability to easily distinguish between different levels of functionality associated with it. As

discussed before, ambulation can be divided into four categories -​community ambulators,

household ambulators, non-functional ambulators, and non-ambulators- depending on the level

of ambulatory function the patient is able to achieve. Based on the information received from

testimonials, each patient can then be labeled as one of the ambulatory types, as classified by
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 12

previous definitions. The only other factor appart from ambulation that was used to determine a

patient’s functionality is their living situation. It is common for the two to parallel because often

those who are able to achieve a higher level of ambulation are able to live more independently

than those whose ambulation may cause for them to need familial or professional assistance.

Due to the fact that independent living was a factor of determining functionality and one’s ability

to support themselves, the research focused on receiving testimonials from those who were

eighteen years of age or older.

In terms of contribution, both employment ability and community activities one

participated in were considered for analysis. Employment ability can refer to one’s capacity to

hold a job or if income is received from other means such as disability entitlements or family

members. This was chosen as a factor of analysis for contribution because many people

associate their job with the impact they are making in their communities and/or society as a

whole. Community activities can range from sports to social events to just going out into the

community on a regular basis. Anything that is in some way social or outside of the normal in

home routine would be considered a contributory activity. This was used to determine one’s

contribution because it is an easy way to measure one’s involvement and participation in the

community around them.

In addition to these terms of functionality and contribution, additional information

regarding the treatment path the patient underwent (prenatal or postnatal) may be influential to

their functionality and therefore their ability to contribute. The following chart was used to

record information regarding the testimonials collected in order to be further analyzed and

potentially determine whether or not a correlation exists between functionality and contribution:
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 13

Surgery/ Ambulatory Living Employment Community

Treatment Level Situation Ability Activities

Testimonia

l1

Testimonia

l2

Testimonia

l3

Upon receiving testimonials, the information provided was analyzed regarding the

previously mentioned criteria and transferred to the above table. The data reflected by the table

was then taken into further consideration and compared to reveal the possible existence of a

correlation between information. If the patient underwent prenatal treatment it is to be assumed

they would have a higher level of functionally and thus are more capable of societal contribution

than if they had undergone postnatal treatment (which would reflect a lower level of

functionality and being less capable of societal contribution). However, depending on the

information they provide regarding their ambulatory level, living situation, employment ability,

and community activities, this statement may not be true. It is often that one can defy the limits

of their functionality, which is a consideration of this research.

Results

After scouring many different online resources, testimonials were analyzed and the
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 14

following information was recorded based on certain qualities that could be used to define

functionality and/or contribution.

Functionality and Contribution Measurement Chart

Surgery/ Ambulatory Living Employment Community

Treatment Level Situation Ability Activities

Testimonial Household Not Volunteering,

1 Yes ambulator Independent Employed adaptive

sports, church

Testimonial Self Volunteering,

2 Yes Community Independent Employed: holds position

ambulator Author in community

organization

Testimonial Yes Community Independent College Active in

3 ambulator Student community

Testimonial Adaptive

4 Yes Non-function Independent No, wishes to sports (swim,

al ambulator join military horseback

ride, etc)

Testimonial Investment

5 Community Lives with Field (20

MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 15

Yes ambulator spouse years), High Active in

School community

Teacher

Testimonial Yes Community Independent Nursing Active in

6 ambulator Student community

Based on the information collected from the testimonials, percentages were used to

display those who fell into each category of responses.

Column 1:

Out of the testimonials recorded, all six reported having undergone surgery/treatment

following their diagnosis (100%). Treatments varied, including postnatal surgery,

tethered spinal cord surgery, and shunt placement surgery. A portion of this study is

focused on determining self sufficiency, so the testimonials were limited to those

eighteen years or older, meaning they had the capacity to live on their own. Since

prenatal surgery is a much newer treatment option and was considered experimental

when many of those who gave testimonies were diagnosed, none of the responses

reflected having undergone prenatal surgery. This makes the results even more

significant, because postnatal surgery is considered to have less effective results and is

harder to fully recover from, suggesting that lower levels of functionality and therefore

contribution, which may be proved differently depending on the analysis of the data.

Column 2:

Out of the testimonials recorded, four reported being at a community ambulator level of
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 16

function (66.67%), one reported being at a household ambulator level of function

(16.67%), one reported being at a non-functional ambulator level of function (16.67%),

and none reported being at a non-ambulatory level of function (0%). The two who

reported being a household ambulator and a non-functionctional ambulator went on to

further explain that their physical condition did not hinder their ability to contribute.

Column 3:

Out of the testimonials recorded, all six reported independent based living situation

(100%), however, one reported they lived with their spouse (it was still apparent they

were functionally independent). None of the responses reported needed any profession

help, nurses/aids, or dependency on a family member when applied to their living

situation.

Column 4:

Out of the testimonials recorded, two reported having a job of some form (33.34%), two

reported being currently enrolled in college or higher education program (not online

based) (33.34%), and two reported not having any form of employment (33.34%),

however, one wished to join the military. Of the jobs reported, one was an author, which

may be considered being self employed and/or an in home occupation. On the other

hand, being a high school teacher requires extensive community interaction since it is a

public workspace and additionally it is financed by the federal government. Additionally,

reporting that one is a college/higher education student reflects not only substantial

community interaction, but additionally a high mental capacity, which tends to be

negatively affected by MMC. Even for the one person who reported not having a job but
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 17

wished to join the military showed a high persistence to not accept their disability and

pushed for contribution anyways. Finally, the one person who did not report having any

form of employment did in response reflect an active lifestyle within their community.

Column 5:

Out of the testimonials recorded, all reported having very normal (100%), active

lifestyles within their community; three reported various activities they participated in

(50%), while the other three briefly mentioned having unrestricted lifestyles (50%). All

the testimonials collected had an overwhelming presence of community involvement and

overall normal lifestyle habits despite how their disability may impact their functionality.

Even for those who were restricted to wheelchairs, the descriptions of their lives was

anything but ones of disability and limitations.

Discussion

The assumption of many is that those who are considered to be disabled are therefore

unable to live active and fulfilling lifestyles due to their physical state. The purpose of this

research project was to address this belief and use data to determine its validity. Found through

data analysis, one’s functionality -as defined by their physical state- did not correlate to their

contribution (although correlation is not causation). From the information gathered from the

testimonials given by those living with the physically debilitating disorder, myelomeningocele,

they were able to have very active lifestyles and make an impact on the community around them.

As stated before, many of them were able to hold a job or attend college which is reflective of

one who is not limited by disability. Other limitation breakers include, living independently and

community involvement.
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 18

When conducting this research, it was decided that testimonials would be collected from

adults, having reached eighteen years of age or older, in order to account for one’s ability to

support themselves and be independent. Considering that many of the testimonials were from

middle aged adults and a few young adults, the prenatal procedures were not yet available or

were considered highly experimental when they were in gestation. As stated before, the prenatal

treatment method for myelomeningocele is considered to have better outcomes and would

therefore be seen to result in an overall better quality of life. It is factors such as these, along

with price and risks, that parents face when they find out that their unborn child has been

diagnosed with myelomeningocele. Taking this information into account, one can look at the

results obtained through this research and conclude that those who gave testimonials lived with

high quality of life, despite being disabled. The fact that they did not receive prenatal treatment,

is significant in determining that the outcomes of postnatal treatment are not as negative as

believed in comparison to prenatal treatment. This information can then be further used to have

implications in the decision making process that parents undergo when determining how to treat

their unborn child that has been diagnosed with MMC.

Based on the information received from data collection, many of those who gave

testimonials had a very positive outlook on their situation. It was their ability to look past their

physical disability and see themselves as having no limits that had such a great impact on their

ability to contribute. A common spoken phrase is “mind over body”, which seems to be very

versed in those who suffer from disabilities such as the ones inflicted by MMC. The testimonials

reflected people with very active, fulfilling, and above average lifestyles due to their ability to

overcome adversity.
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 19

Conclusion

As concluded by the findings of this research project, there is not necessarily a

correlation between functionality and contribution in those who live with myelomeningocele.

Additionally, this research has worked to gather that one’s physical state does not have to limit

their ability to interact in society and create a lasting impact. The conclusions gained from this

research can extend to other disorders apart from myelomeningocele and apply to anyone who is

considered to be ‘disabled’.

With more time and resources, testimonials could have been obtained directly from those

who live with MMC and a more personalized interview technique could be executed to get the

specific information needed. Using online publication sources to get the data needed was

limiting in some aspects and impacted the method of data collection that was used. For future

researchers, getting connected with a doctor who has access to adult patients with

myelomeningocele who give consent to be interviewed, would be a great asset in the

methodology and data collection portions of research. Being able to ask the specific questions

that pertain to one’s research is a favorable option rather than taking data and adjusting the

methodology to fit it. Due to the fact that this research was limited to being on a small scale,

getting more responses would create a better reflection of everyone encompassed within this

disorder.

In order to ensure the data is more significant and to ensure stronger grounds around the

findings, more testimonials could be collected. That was a limitation in this research project

because myelomeningocele is so rare, it is harder to find testimonials for it rather than spina
MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 20

bifida as a whole. Being connected with someone who has access specifically to

myelomeningocele patients can be beneficial in that area.

Families with children diagnosed with myelomeningocele are faced with the decision of

the treatment methods they wish to pursue. In making this decision, parents must consider the

risks, outcomes, and costs all while considering the life of their unborn child. On top of that,

parents are faced with deciding their child’s quality of life based on their ability to function and

contribute in society. Regarding the information found about patients with MMC in terms of

their treatment routes along with the level of functionality associated, it comes into question the

contribution to society they may provide. This research worked to determine if one’s

functionality correlates to their contribution to society. When considering the terms of

functionality and contribution, one can determine the quality of life of a patient suffering from

MMC, which could be a significant factor for parents when initially deciding the treatment

option they wish to pursue for their unborn child.

The gap this research project worked to fill was bridging assumptions people make about

the disabled and answering questions involving such assumptions. Although it is not the primary

focus, the knowledge gained from this research may reflect that taking the risk of prenatal

surgery is not always necessary in order to ensure the child would have a better quality of life,

when considering ability to contribute and interact within society. Information obtained from

this research project could be substantial for questioning parents who are faced with deciding the

livelihood of their unborn child.

MYELOMENINGOCELE: FUNCTIONALITY VS. CONTRIBUTION 21

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NINDS (2013). Spina Bifida Fact Sheet. National Institute of Neurological Disorders and Stroke,

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Adzick, N. S. (2012). Fetal surgery for myelomeningocele: trials and tribulations. Journal of

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Adzick, N. S., Thom, E. A., Spong, C. Y., Brock, J. W., Burrows, P. K., Johnson, M. P., . . .

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Mitchell, L. E., Dr, Melchionne, N. S., Prof, Melchionne, J., Pasquariello, P. S., Prof, Sutton, L.

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Hoffer, M., M.D., Feiwell, E., M.D., Perry, R., M.D., Perry, J., M.D., & Bonnett, C., M.D.

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