General Information on Omphalocele & Ruth's Condition and Treatment
Introduction
This series of pages was prepared in late September/October 2001.
We have attempted to put much of the information that was originally presented in the General Information page in context having spent just over eight months living with the realities of Ruth's case.In broad terms these pages address the following areas:
- The nature of Ruth's condition which is called Exomphalus or Omphalocele together with the treatment strategies commonly used to address this condition.
- The evolution of Ruth's treatment, given the specifics of her case.
- The nature of the challenges in Ruth's case together with a review of how they evolved over time.
Once again, visitors are reminded that while we have always attempted to ensure the accuracy of the information presented throughout this site, it is not presented as medical or scientific fact. It has been prepared by us, who as parents and non-medics may be subject to error in either material fact or interpretation. It is also stressed that our understanding of the majority of the material is based solely on the specifics of Ruth's case only.
As a rule we believe it would be unwise to make direct comparisons between different cases involving Omphalocele. Each case is distinct and highly specific. We would strongly recommend that all queries or concerns any visitors may should be resolved in consultation and discussion with qualified medical professionals.
The Background to Ruth's Case & General Information on Omphalocele or Exomplalus This page provides some general information about the Omphalocele condition and an insight to Ruth's initial diagnosis.
The Evolution of Ruth's Treatment Strategy This page provides an outline of some of the surgical strategies commonly used in the treatment of Omphalocele. It also provides an insight into why some of the more common, short-term strategies were not feasible in Ruth's case and the nature of the long-term strategy that evolved as a result.
The Main Challenges & Risks in The First Months of Ruth's Case Regardless of the nature of the surgical strategy employed to treat an Omphalocele, it would be correct to say that it is a very serious, potentially life-threatening condition. The treatment of any baby born with Omphalocele involves numerous challenges and risks.
This page outlines some of general risks and challenges associated with the treatment of Omphalocele with an emphasis on the specifics surrounding Ruth's case and how they have evolved over time.
The Significant of Intravenous Lines During The First Few Months of Ruth's Treatment IV access is commonly required in the treatment of babies with surgical conditions such as Omphalocele. However, there can often be difficulties maintaining long-term IV access in small newborn babies. Furthermore, IV lines can in themselves be a source of infection.
In the initial few months of treatment, Ruth had significant issues in both of these areas. This page provides an insight to both the nature of IV lines and the difficulties they have presented in Ruth's case.
The Nature of Ruth's Ventilation Requirements and Management Babies born with Omphalocele frequently require the assistance of mechanical ventilation. The conservative, long term nature to Ruth's surgical strategy has also resulted in a long-term requirement for mechanical ventilation in her case. This page provides an insight to the nature of this area of her case.
The Importance of Feeding in Ruth's Case Feeding and feeding-related difficulties can be a common problems with Omphalocele babies. Establishing and maintaining an entero and/or oral feeding capability is a crucial element in the treatment and overall well being of such babies . This is particularly true in Ruth's case. This page provides an insight to the establishment of Ruth's entero feeding and the huge importance feeding plays in Ruth's case.
The Summaries of Ruth's Case Conferences Ruth has been quite a complex medical case. Her treatment has involved input from a host of anesthetic, surgical, pediatric and general medical consultants, doctors and ICU nursing teams. These in turn are supported by a dietitian, physio and occupational therapists, microbiology and dermatology consultants, radiographers etc.
While we are in constant communication with members of Ruth's teams, periodically case conferences with all of Ruth's combined teams provide valuable opportunities to review progress and map future steps and objectives. This pages provides summaries of the case conferences to date.
Links To Further Reading For those who can never get enough, this page provide links to other sites where we have found useful information. For reasons of time and practicality, it is intended that this page will grow over time.