Our Summary

This research paper investigates the challenges faced by children who have survived a Congenital Diaphragmatic Hernia (CDH) - a birth defect where there is a hole in the diaphragm. These children often endure ongoing health issues and need multiple types of medical care even after their initial treatment.

Researchers reviewed the medical data of CDH patients aged 0-12 years who received treatment at Riley Hospital for Children between 2010 and 2019. They also conducted a survey with the families of these patients to understand their experiences and challenges in accessing ongoing care.

The results showed that about half of the children did not continue with their follow-up care with specialist doctors. The reasons for this were not related to the severity of the condition or how many other health issues the child had. Instead, the main obstacles that families reported were the distance and time needed to access medical care, difficulty in finding information and resources specific to CDH, and issues with accessing healthcare in general.

Despite these challenges, all the families surveyed were interested in a clinic that could provide all the different types of care their child needed in one place. The researchers conclude that such a multidisciplinary clinic could address the problems these families face in getting the necessary medical care for their children.

FAQs

  1. What is a Congenital Diaphragmatic Hernia (CDH) and what challenges do children who have survived it face?
  2. What were the main obstacles that families reported in accessing ongoing care for their children with CDH according to the research?
  3. What is the suggested solution by the researchers to address the challenges faced by families in getting necessary medical care for their children with CDH?

Doctor’s Tip

A doctor might advise a patient undergoing congenital diaphragmatic hernia repair to ensure they follow up with their specialist doctors regularly for ongoing care and monitoring. It is important to address any concerns or complications promptly to ensure the best possible outcome. Additionally, staying informed about resources and support available for CDH patients can help navigate the healthcare system more effectively. If possible, seeking out a multidisciplinary clinic that can provide comprehensive care for all the child’s needs may be beneficial in managing their condition.

Suitable For

Patients who are typically recommended congenital diaphragmatic hernia repair are infants and children diagnosed with CDH. This includes newborns who are diagnosed with the condition shortly after birth, as well as older children who may have ongoing health issues related to their CDH. These patients may require surgical repair of the diaphragmatic hernia, as well as ongoing follow-up care with specialists to monitor their health and address any related complications.

Timeline

  • Before CDH repair:
  1. Diagnosis of CDH through prenatal ultrasound or after birth.
  2. Monitoring of the baby’s health and lung function in the neonatal intensive care unit (NICU).
  3. Surgical repair of the diaphragmatic hernia to correct the defect.
  4. Recovery period in the hospital with monitoring for complications.
  • After CDH repair:
  1. Ongoing follow-up care with specialists to monitor the child’s growth and development.
  2. Potential need for respiratory therapy or other medical interventions to address lung issues.
  3. Potential need for feeding therapy or gastrointestinal interventions to address digestive issues.
  4. Challenges in accessing ongoing medical care due to distance, lack of resources, and other barriers.
  5. Interest in a multidisciplinary clinic to provide comprehensive care for CDH patients.

What to Ask Your Doctor

Some questions a patient should ask their doctor about congenital diaphragmatic hernia repair may include:

  1. What are the potential risks and complications associated with the surgery for congenital diaphragmatic hernia repair?
  2. What is the expected recovery time following surgery for congenital diaphragmatic hernia repair?
  3. Will my child need ongoing medical care or follow-up appointments after the surgery?
  4. Are there any long-term effects or health issues that my child may experience as a result of congenital diaphragmatic hernia?
  5. What resources or support services are available for families of children with congenital diaphragmatic hernia?
  6. Are there any specific dietary or lifestyle changes that my child should follow after surgery for congenital diaphragmatic hernia repair?
  7. Are there any clinical trials or research studies that my child may be eligible to participate in for congenital diaphragmatic hernia treatment?
  8. How can I best prepare my child for the surgery and recovery process for congenital diaphragmatic hernia repair?
  9. What is the success rate of congenital diaphragmatic hernia repair surgery in children?
  10. Are there any alternative treatment options or complementary therapies that may benefit my child’s recovery from congenital diaphragmatic hernia repair surgery?

Reference

Authors: Tragesser CJ, Hafezi N, Kitsis M, Markel TA, Gray BW. Journal: J Surg Res. 2021 Nov;267:243-250. doi: 10.1016/j.jss.2021.05.022. Epub 2021 Jun 23. PMID: 34171561