Hi - I'm hoping to find out some information on a condition called "extrophy-epispadias complex" including "hypospadias" where the child's bladder is on the outside and some other things are not the usual place with genitals and urinary tract. As I understand it is very, very rare but I am hoping to hear from other parents who have possibly had a child with something similar to this. We are considering adopting a specific child with this condition and this child needs surgery (at least for the bladder to be put into the body). But as far as having a child go through surgery(ies) and stuff like that - In other words - I'm wondering if this will require weeks or days in the hospital for recovery and what type of recovery at home for this type of surgery? It's not going to make or break our desicion - we just want to know what we're entering into beforehand and be prepared. Our insurance says they'll cover "medically nessesary" stuff but I'm wondering if the child's genitals will need to be reconfigured or anything like that if that typically gets done when repairing urethra or if they'll probably consider it seperate and "cosmedic". I want to be sure we're committed to help this child if he/she needs cosmedic surgery. And if we don't feel we can be then we'll know that this child needs a different family. It's so difficult for me to find good info on this condition because it's so rare. I also will want to be careful about helping this child have a healthy view of themselves and am not sure cosmetic surgery will be needed or nessesary or not for this. We feel we can be supportive to this child to love him/herself no matter what they look like - but of course we want to be informed in order to do the best we can as parents. Does anyone out there have ANY idea about the procedures, costs, etc... for children with this or "like" conditions and what it might be with a child going through the recovery from surgery? We've been blessed thus far with healthy kids so I just don't know what it all will entail. Will he/she most likely just be in bed for some weeks (like women who've had c-sections - I have cared for a SIL after that) and need to be tended to and supported like that? It's a VERY young child (non-verbal) so there's not much explaining to do - just will be "being there" for them, really, I think. Â
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I have young children so I am thinking during this process we'll need to have family helping us with them while the surgery is going and early recovery. ?? I need to hear from moms who have multiple children and where one has had to go through some surgeries and recovery and what to possibly expect if we follow through with this adoption of this sweet little one.Â
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