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40,885 members
Jul 13, 2010

Seeking Advice for Raising a Child with Cloacal Exstrophy

Topic Explanation
The forum topic "Seeking Advice for Raising a Child with Cloacal Exstrophy" is initiated by a parent named Debbie, who is seeking advice and insights from individuals who have grown up with Cloacal Exstrophy or have experience with the condition. Cloacal Exstrophy is a rare congenital disorder affecting the pelvic region, and Debbie is particularly interested in connecting with older males who have lived with this condition to understand how they have managed life challenges related to it.

Advice and Insights from Replies
1. Support and Encouragement:
- Several replies offer general words of encouragement and support, acknowledging the challenges but emphasizing the importance of love and care in managing the condition.

2. Personal Experiences:
- One individual shared his personal experience with a similar condition, noting that he had undergone reconstructive surgery at a young age and has lived a relatively trouble-free life since then. This insight might provide some hope regarding the effectiveness of medical interventions.

3. Practical Advice:
- It was suggested to look for support from other parents on the forum who have children with ostomies, as they might have relevant experiences or advice.
- The use of better quality pouches and possibly using tape or a belt to secure the flange and pouch was mentioned, which could be practical advice for managing an ostomy effectively.

4. Connecting for Further Discussion:
- There was an attempt to connect via social media for more personal and direct communication, indicating the importance of building a support network with individuals or parents in similar situations.
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