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Case Study Of Critical Congenital Heart Defects

Case Study Of Critical Congenital Heart Defects

Advantages and disadvantages of the congressional legislators a

Approaching congressional legislators or state legislators to get this matter on the agenda is associated with advantages and disadvantages. First, the congressional legislators have been given sole authority by the constitution to enact legislation and the right to confirm presidential appointments; hence can get the IssueIssue on the agenda. However, congressional legislators have the right to reject presidential appointments. Thus, they can reject the IssueIssue, preventing it from reaching the president for approval. On the other hand, state legislators constitute elected representatives who can support the presented issue to become law. Nonetheless, the IssueIssue will be dismissed if most representatives reject it. Case Study Of Critical Congenital Heart Defects

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Healthcare Organizations that would have a stake in this IssueIssue

Healthcare organizations that would have a stake in this IssueIssue include the Health and Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), the American Academy of Pediatrics, and the American Heart Association, and the American College of Cardiology. I would present statistics on the high prevalence of critical congenital heart defect (CCHD) cases and mortalities among newborns to persuade these organizations to join my move to seek a legislative solution. According to Bakker et al. (2019), the prevalence of critical congenital heart defect (CCHD) has increased dramatically, becoming the most common congenital disability. These organizations will support the plan to seek legislative solutions upon becoming aware of these statistics.

Government Agencies

Government agencies that advocate for the health and well-being of infants might also be interested in this issue. For instance, the Children’s Bureau (CB) would be interested in this IssueIssue since its primary goal is to promote children’s health at the national level. On the contrary, critical congenital heart defect (CCHD) compromises the health and wellbeing of infants born with this condition (Stallings et al., 2022)Case Study Of Critical Congenital Heart Defects. Therefore, addressing this IssueIssue would promote the health and well-being of children in the United States. I could find a legislator with a personal experience with CCHD who would become a policy champion by reviewing records of individuals affected by this issue.

A strategy for achieving a win-win outcome

Upon finding an organization willing to join but with a different focus, I would use a negotiation strategy. This conflict resolution approach allows conflicting parties to collaborate to create a “win-win” solution to their difference. If the other’s goal becomes a barrier to the set goal, I would prefer to do away with the other organization since that is the only way of achieving the set goal.

Potential language for a bill

Various tools are used to encourage compliance with the proposed policy if it is passed into law. The first tool involves developing well-designed policies and procedures to guide individuals affected by the new law. The second tool involves developing a governance structure that supports compliance with the new law. The last tool involves setting punishments, including penalties and fines, to discourage non-compliance.

Opposing this law

The proposed law will involve mandatory cardiac and pulse oximetry screening for critical congenital heart defect (CCHD)Case Study Of Critical Congenital Heart Defects. This law might be opposed by hospitals and medical facilities that might not be willing to incur additional costs in performing this procedure. The opposition can be addressed by creating awareness regarding benefits associated with the new law, including reducing the high prevalence of CCHD cases and deaths.

Evaluating policy’s effectiveness and efficiency

The effectiveness and efficiency of the new policy will be evaluated by assessing rates of CCHD mortality rates following the implementation of the new policy. A decrease in CCHD mortalities will indicate that the new policy effectively addresses the IssueIssue.

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References

Bakker, M. K., Bergman, J. E., Krikov, S., Amar, E., Cocchi, G., Cragan, J., … & Botto, L. D. (2019). Prenatal diagnosis and prevalence of critical congenital heart defects: an international retrospective cohort study. BMJ Open, 9(7), e028139. DOI: 10.1136/BMJ open-2018-028139

Stallings, E. B., Isenburg, J. L., Aggarwal, D., Lupo, P. J., Oster, M. E., Shephard, H., … & National Birth Defects Prevention Network. (2022). Prevalence of critical congenital heart defects and selected co‐occurring congenital anomalies, 2014–2018: A US population‐based study. Congenital disabilities research, 114(2), 45-56. Doi: 10.1002/bdr2.1980 Case Study Of Critical Congenital Heart Defects

THE CASE STUDY QUESTIONS WERE NOT ANSWERED:

CASE STUDY 9-5: Interprofessional Collaboration on Health Policy Related to Critical Congenital Heart Defects

 

Donna Ryan, DNP, RN, CNE, Assistant Professor, Elmira College (New York)

 

It was 7:00 a.m. when Christine began to breastfeed her seemingly healthy 5-day-old baby. Zach was vaginally delivered after a normal pregnancy and routine labor. Despite Christine’s exhaustion as a first-time mother, everything was going fine so far. Christine looked up at her husband, Jeff, who was just out of the shower and getting ready for work. She then looked back down at Zach to find him a sickly blue-gray color: Zach had stopped breathing. Christine screamed to Jeff, and he called 911. The parents were not trained to perform infant cardiopulmonary resuscitation (CPR) and as they anxiously waited for the ambulance to arrive, they decided to rush Zach to the hospital themselves. Despite attempts to revive Zach in the emergency department of their local hospital, he was pronounced dead a few hours later. The couple’s baby was dead, and they did not know why: There had been no warning signs of the heart defect that took Zach’s life. A week later, Christine and Jeff were told that Zach was born with a critical congenital heart defect (CCHD). They later learned that screening for CCHD with commonly available pulse oximetry might have prevented Zach’s death (Save Babies Through Screening Foundation, 2012)Case Study Of Critical Congenital Heart Defects.

Congenital heart disease (CHD) is the most common birth defect among the major anomalies involving the structure of the heart or the blood flow of the heart (Hom & Martin, 2016). Approximately 8 to 12 of every 1,000 newborns have a form of CHD (Frank, Bradshaw, Beekman, Mahle, & Martin, 2013). A prenatal diagnosis of CHD is made in only 50% of infants with this type of disease (Koppel et al., 2003; Mahle et al., 2009; Thangaratinam, Daniels, Ewer, Zamora, & Khan, 2007). Some forms of CHD cause no, or very few, problems in the health, growth, and development of the infant (CDC, 2015). CHD accounts for 24% of all infant deaths due to birth defects in the United States (CDC, 2014)Case Study Of Critical Congenital Heart Defects.

Approximately one in four babies with a heart defect has CCHD (Oster et al., 2013). CCHD is a form of CHD that is usually associated with hypoxia in the newborn period and requires intervention during the first months of life (CDC, 2015; Martin & Bradshaw, 2012). Approximately 30% to 50% of infants with CCHD may leave the hospital undiagnosed (Kumar, 2016). The consequences of delaying treatment until the infant becomes critically ill are often a higher mortality rate, a much longer stay in the intensive care unit, and a higher incidence of serious complications such as neurological impairment (Mahle et al., 2009)Case Study Of Critical Congenital Heart Defects.

Interprofessional stakeholders generally agree that sufficient evidence exists to support CCHD screening by pulse oximetry after 24 hours of age and before discharge of a newborn. Screening to promote early detection of CCHD has been endorsed by the Health and Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), the American Heart Association, the American Academy of Pediatrics, the American College of Cardiology Foundation (Mahle, Martin, Beekman, & Morrow, 2012)Case Study Of Critical Congenital Heart Defects, and the March of Dimes. Nurses are well positioned to play a leadership role in ensuring all newborns are screened for critical congenital heart disease.

Since newborn screening for CCHD was added to the U.S. Recommended Uniform Screening Panel in 2011, most states have passed legislation that promotes routine newborn screening for CCHD (AAP, 2015; Mahle et al., 2012; Oster et al., 2016). CCHD screening with pulse oximetry is simple and inexpensive—comparable to the cost of a diaper change. According to Ewer (2016), such screening increases the overall detection rate for CCHD to more than 90%. Ailes, Gilboa, Honein, and Oster (2015, p. 1000) estimate that approximately 875 infants with CCHD might be detected, and approximately 880 missed, annually through universal CCHD screening in the United States.

Once parents understood that in some cases, their newborn infants might not have died if they had received CCHD screening prior to discharge, they became instrumental in raising awareness of this screening and its significance in preventing undiagnosed CCHD through social media. Many parents shared their personal tragedies and advocated to state legislators to pass mandatory screening bills throughout the United States. After hearing these heart-wrenching stories from parents, policymakers were more supportive in exploring legislation.

One example of interprofessional collaboration to achieve legislation occurred in North Carolina in October 2012. Dr. Alex Kemper—a Duke pediatrician, co-editor of Journal of Pediatrics, and member of the SACHDNC—spoke to the Perinatal Health Committee, which is a subcommittee of the Child Fatality Task Force and the North Carolina Healthcare Senate Standing Committee (SACHDNC, 2012)Case Study Of Critical Congenital Heart Defects. Dr. Kemper, along with several parents of children with CCHD, discussed how CCHD screening by pulse oximetry could save the lives of newborns across North Carolina. They explained that this screening is a painless, noninvasive test that increases the ability to identify newborns with CCHD before they clinically decompensate.

In North Carolina, a wide range of stakeholders, including families of children with CCHD, pediatricians, neonatologists, nurse practitioners, nurse–midwives, and representatives from the N.C. Hospital Association, the N.C. Chapter of the American Heart Association, the N.C. Chapter of the March of Dimes, the Perinatal Quality Collaborative of North Carolina, the N.C. Board of Nursing, the N.C. Academy of Family Physicians, and the N.C. Academy of Physician Assistants, engaged in the development of the guidelines for CCHD screening (Perinatal Quality Collaborative of North Carolina [PQCNC], n.d., para 2). The North Carolina state legislature passed Session Law 2013-15 on July 25, 2014 (PQCNC, n.d.); it required all newborns born in hospitals, birthing centers, and homes to be screened for CCHD by 24–48 hours of age. PQCNC developed a database to handle the reporting requirements for CCHD and provides resources on this issue, including provider continuing education webinars and educational materials for parents Case Study Of Critical Congenital Heart Defects.

  1. Argue the advantages and disadvantages of approaching congressional legislators versus state legislators to get this issue on the agenda.
  2. Identify at least four people or organizations that would have a stake in this issue. Which information could you provide to persuade them to join you in your plan to seek a legislative solution? Do not limit yourself to research.
  3. Which government agencies might have an interest in this issue? How could you find a legislator who has had personal experience with this issue who could become a policy entrepreneur/champion?
  4. Suppose that one person/organization agrees to join you but has a different (albeit related) focus. Which tactics can you construct that could end with a win–win outcome? Which options do you have if the other’s goal becomes a barrier to your goal?
  5. Develop potential language for a bill. What are three policy tools that could be used to encourage compliance with the law if passed?
  6. Who might oppose this law? Develop responses to address the opposition.
  7. Determine criteria for evaluating the effectiveness and efficiency of the policy/program. Develop a tool to measure the outcomes. Who will use the tool? At which point(s) should the policy/program be evaluated? Case Study Of Critical Congenital Heart Defects

PLEASE ANSWER CASE STUDY QUESTIONS
CASE STUDY 9-5: Interprofessional Collaboration on Health Policy Related to Critical Congenital Heart Defects

Donna Ryan, DNP, RN, CNE, Assistant Professor, Elmira College (New York)

It was 7:00 a.m. when Christine began to breastfeed her seemingly healthy 5-day-old baby. Zach was vaginally delivered after a normal pregnancy and routine labor. Despite Christine’s exhaustion as a first-time mother, everything was going fine so far. Christine looked up at her husband, Jeff, who was just out of the shower and getting ready for work. She then looked back down at Zach to find him a sickly blue-gray color: Zach had stopped breathing. Christine screamed to Jeff, and he called 911. The parents were not trained to perform infant cardiopulmonary resuscitation (CPR) and as they anxiously waited for the ambulance to arrive, they decided to rush Zach to the hospital themselves. Despite attempts to revive Zach in the emergency department of their local hospital, he was pronounced dead a few hours later. The couple’s baby was dead, and they did not know why: There had been no warning signs of the heart defect that took Zach’s life. A week later, Christine and Jeff were told that Zach was born with a critical congenital heart defect (CCHD). They later learned that screening for CCHD with commonly available pulse oximetry might have prevented Zach’s death (Save Babies Through Screening Foundation, 2012)Case Study Of Critical Congenital Heart Defects.

Congenital heart disease (CHD) is the most common birth defect among the major anomalies involving the structure of the heart or the blood flow of the heart (Hom & Martin, 2016). Approximately 8 to 12 of every 1,000 newborns have a form of CHD (Frank, Bradshaw, Beekman, Mahle, & Martin, 2013). A prenatal diagnosis of CHD is made in only 50% of infants with this type of disease (Koppel et al., 2003; Mahle et al., 2009; Thangaratinam, Daniels, Ewer, Zamora, & Khan, 2007). Some forms of CHD cause no, or very few, problems in the health, growth, and development of the infant (CDC, 2015). CHD accounts for 24% of all infant deaths due to birth defects in the United States (CDC, 2014)Case Study Of Critical Congenital Heart Defects.

Approximately one in four babies with a heart defect has CCHD (Oster et al., 2013). CCHD is a form of CHD that is usually associated with hypoxia in the newborn period and requires intervention during the first months of life (CDC, 2015; Martin & Bradshaw, 2012). Approximately 30% to 50% of infants with CCHD may leave the hospital undiagnosed (Kumar, 2016). The consequences of delaying treatment until the infant becomes critically ill are often a higher mortality rate, a much longer stay in the intensive care unit, and a higher incidence of serious complications such as neurological impairment (Mahle et al., 2009).

Interprofessional stakeholders generally agree that sufficient evidence exists to support CCHD screening by pulse oximetry after 24 hours of age and before discharge of a newborn. Screening to promote early detection of CCHD has been endorsed by the Health and Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), the American Heart Association, the American Academy of Pediatrics, the American College of Cardiology Foundation (Mahle, Martin, Beekman, & Morrow, 2012), and the March of Dimes. Nurses are well positioned to play a leadership role in ensuring all newborns are screened for critical congenital heart disease.

Since newborn screening for CCHD was added to the U.S. Recommended Uniform Screening Panel in 2011, most states have passed legislation that promotes routine newborn screening for CCHD (AAP, 2015; Mahle et al., 2012; Oster et al., 2016). CCHD screening with pulse oximetry is simple and inexpensive—comparable to the cost of a diaper change. According to Ewer (2016)Case Study Of Critical Congenital Heart Defects, such screening increases the overall detection rate for CCHD to more than 90%. Ailes, Gilboa, Honein, and Oster (2015, p. 1000) estimate that approximately 875 infants with CCHD might be detected, and approximately 880 missed, annually through universal CCHD screening in the United States.

Once parents understood that in some cases, their newborn infants might not have died if they had received CCHD screening prior to discharge, they became instrumental in raising awareness of this screening and its significance in preventing undiagnosed CCHD through social media. Many parents shared their personal tragedies and advocated to state legislators to pass mandatory screening bills throughout the United States. After hearing these heart-wrenching stories from parents, policymakers were more supportive in exploring legislation.

One example of interprofessional collaboration to achieve legislation occurred in North Carolina in October 2012. Dr. Alex Kemper—a Duke pediatrician, co-editor of Journal of Pediatrics, and member of the SACHDNC—spoke to the Perinatal Health Committee, which is a subcommittee of the Child Fatality Task Force and the North Carolina Healthcare Senate Standing Committee (SACHDNC, 2012). Dr. Kemper, along with several parents of children with CCHD, discussed how CCHD screening by pulse oximetry could save the lives of newborns across North Carolina. They explained that this screening is a painless, noninvasive test that increases the ability to identify newborns with CCHD before they clinically decompensate.

In North Carolina, a wide range of stakeholders, including families of children with CCHD, pediatricians, neonatologists, nurse practitioners, nurse–midwives, and representatives from the N.C. Hospital Association, the N.C. Chapter of the American Heart Association, the N.C. Chapter of the March of Dimes, the Perinatal Quality Collaborative of North Carolina, the N.C. Board of Nursing, the N.C. Academy of Family Physicians, and the N.C. Academy of Physician Assistants, engaged in the development of the guidelines for CCHD screening (Perinatal Quality Collaborative of North Carolina [PQCNC], n.d., para 2)Case Study Of Critical Congenital Heart Defects. The North Carolina state legislature passed Session Law 2013-15 on July 25, 2014 (PQCNC, n.d.); it required all newborns born in hospitals, birthing centers, and homes to be screened for CCHD by 24–48 hours of age. PQCNC developed a database to handle the reporting requirements for CCHD and provides resources on this issue, including provider continuing education webinars and educational materials for parents.

1. Argue the advantages and disadvantages of approaching congressional legislators versus state legislators to get this issue on the agenda.
2. Identify at least four people or organizations that would have a stake in this issue. Which information could you provide to persuade them to join you in your plan to seek a legislative solution? Do not limit yourself to research.
3. Which government agencies might have an interest in this issue? How could you find a legislator who has had personal experience with this issue who could become a policy entrepreneur/champion?

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4. Suppose that one person/organization agrees to join you but has a different (albeit related) focus. Which tactics can you construct that could end with a win–win outcome? Which options do you have if the other’s goal becomes a barrier to your goal?
5. Develop potential language for a bill. What are three policy tools that could be used to encourage compliance with the law if passed?
6. Who might oppose this law? Develop responses to address the opposition.
7. Determine criteria for evaluating the effectiveness and efficiency of the policy/program. Develop a tool to measure the outcomes. Who will use the tool? At which point(s) should the policy/program be evaluated?Case Study Of Critical Congenital Heart Defects