Please select from the following resources:

• Educate Yourself
  • Visit Our Learning Center
• Preparing Your Child for Bladder Neck Reconstruction
• Advice on Privacy: When do you let people know about your child’s condition and to whom should you reveal it?
• Book: Living With Bladder Exstrophy
• Prenatal Detection of Bladder Exstrophy
• Bladder Exstrophy Webcast - from Children's Hospital Boston's Center for Bladder Exstrophy Care and Support (Topics discussed include diagnosis, surgical treatment, and lifelong exstrophy management in addition to excerpts of a complete repair procedure).
• ABC Member Photo Album, Stories and Experiences
• Hospitalizations
  • So, Your Child Is Going To Have Surgery - A guide to hospitalization
  • What to Pack/Bring to the Hopsital
• FAQ's
  • I have one child with exstrophy. What is the chance of our having another?
  • Why does the risk go up after having a child with exstrophy?

So, Your Child Is Going To Have Surgery - A Guide to Hospitalization
It doesn't seem to matter if this is your child's first surgery or her tenth your emotions still run high.  In one respect, you are glad that the surgery is being done.  After all, it may improve your child's quality of life.  On the other hand, what if something goes wrong?  What should you expect from the surgery? What do you expect after surgery?  This section is intended to provide you with some tips and advice so that you may stop, take one day at a time and prepare for this very important juncture.

• You are an advocate and partner.
• Preparing your child for surgery.
• Preparing siblings for surgery.
• Coping with pain and its management.
• When it is time to go home.

• As a partner you should know the names of each member of the team providing care for your child, what type of care they are providing and what is their experience in providing this type of care.
• You are responsible for providing correct and complete health information to your child's health care team.  Reference your child's Care Notebook for specifics on last tests conducted, procedures performed and medications taken or currently being used.
• You should receive complete information about your child's condition, tests, procedures, surgeries, treatments and recovery.  This information should be recorded in your child's Care Notebook for future reference.
• You should receive complete information about unexpected outcomes of tests, procedures, surgeries and treatments and recovery and discuss, with your child's surgeon, other alternatives (if any) or remedies.
• You should ask questions and receive answers concerning things that you do not understand about your child's care, tests, procedures, surgeries, treatment and recovery.  When at home you will need to be self-sufficient concerning your child's care.
• Out of respect for you and the care that you provide to your child, you should be asked for your permission to treat your child, except in an emergency.  You should refuse treatment, to the extent permitted by law, if you are not comfortable with any test, procedure, surgery or treatment.  (Be informed of the effects of refusing treatment.)
• As a partner of the health care team, you should be able to make reasonable requests concerning your child's care.  Develop a Care Plan with your child's health care team.  Present your requests in a calm but confident manner. Your requests should receive a reasonable response and you should be informed in the event that your request has been denied and the reasons leading up to that decision.
• a partner, parent and advocate for your child you can view your child's medical record.  This will help in maintaining your child's Care Notebook. This will also insure that the nurses are following the Doctor's orders.  Many a well meaning nurse will do it their way and it is NOT necessarily what the Dr. wanted or ordered.  Also, nurses have many patients to care for and may miss something concerning your child's care.  You have one patient, your son or daughter. You need to ensure that they are receiving the kind of care that the "doctor ordered."
• To continue your respected partnership with your child's health care professionals, help you monitor your child's recovery and insure quality care you should receive information about organizations, support groups or other resources (if any) that are available to help you after your discharge and return home.

Preparing your Child for Surgery: It is your job to reassure your child and make them feel safe.
When my little girl was a baby it was easier, in a way, to prepare for her to have surgery.  At that time, I just had to prepare myself and deal with my own apprehensions.  As she grows and becomes more aware of what is going on around her I find that I not only have to prepare myself but prepare her for surgery.

• First, prepare yourself for this juncture.  Prepare yourself emotionally and by finding answers to the questions that follow.
  1. What is going to happen in surgery?
  2. What is the surgery trying to accomplish?
  3. What will recovery be like?
  4. How long is the estimated time frame of recovery?
  5. What will life be like after recovery?
  6. What new techniques will have to be learned?

• When trying to introduce the subject to your child use their age to decide how far ahead to tell them about their hospitalization.  I've been told that a good predictor is the number of years old they are is the number of days in advance you start talking to them about it.  So if your child is five years old you start talking about it five days in advance.
  
• When telling your child about the surgery or answering their questions about the surgery try to be as honest as possible.  Don't be afraid to tell them that it is going to hurt.  Reassure them that you and the hospital care team are going to work together to help it hurt less.  By giving your child honest information they will know what to expect, it will lessen their tension and help them to trust you and their care team.
  
• Try to work with the hospital's child life department in setting up a "pre-admission" tour.  This will help your child to understand what will happen and will let them become more comfortable with some of the medical equipment.  They may even get to play with the equipment in an organized "medical play session."
  
• If your child talks about being afraid, talk to them about things they can do to cope with fear.  Good examples are imagery or holding a special toy or blanket.  Every child is different.  It is likely that every visit may be different in terms of what soothes their fears. Find out what works for your child and focus on that.
  
• Your child may feel that they do not have any control over what is happening, especially if this is surgery number ten.  Try to involve your child in the planning phases as much as their age and understanding will allow.  Let them help pack their bag with their favorite toy, blanket, videos, puzzles, games and books. Let them make decisions in the Care Plan.
  
• Read a book to your child about going to the hospital.

Don't forget, siblings will have questions, fears and anxieties too!
While it may seem at times that your world and that of your exstrophy child's are the only ones affected by a hospitalization, it is important to remember that a disability affects the WHOLE family.  Siblings, too, will be dealing with emotions and feelings that they may not understand.  Trying to "protect" a sibling by not telling them age appropriate information will only make them feel worried and left out.

Coping with Pain and its Management
Know that during those long hours post-op, when pain can be so frightening it helps to just be there, if even to just hold his hand!

As quoted in the book, Living With Bladder Exstrophy, "Unrelieved pain destroys the quality of life.  Its physical effects are . very harmful. Pain interferes with sleep, decreases one's appetite, and leads to fatigue .  these effects can result in a weakened person who will heal slowly and is more susceptible to infection and bleeding." 

Not only are those statements correct, but also pain is down right dehumanizing for a child to go through and a parent to watch. There are various ways to manage pain.  The pharmacologic ways (with meds) and the nonpharmacologic ways (without meds).  You should discuss with your child's doctor the pain meds that are available and what their side effects are.  Following are some tips obtained from, The Comfort Zone, a publication put out by Children's Hospital of Wisconsin - Milwaukee. These activities are intended to help you help your child manage pain.  I encourage you to try some of these.  Find the ones that seem to work well for your child.  By actively participating in your child's pain management it will help you to not feel so helpless during your child's pain and recovery period.

FOR INFANTS:

• Holding and/or rocking
• Singing
• Music
• Gentle massage
• Pacifier

FOR TODDLERS:

• Holding and/or rocking

• Music
• Bubble-blowing

FOR PRESCHOOLERS:

• Bubble-blowing
• Storytelling
• Videotapes
• Distraction

 FOR SCHOOL-AGE AND ADOLESCENTS:

• Breathing techniques
• Visual imagery
• Videotapes
• Music
• Distraction
• Reading
• Massage

The following link also has some nice information on pain management for children.  Even though it is for children who are suffering from cancer, this site does coach parents through some distraction, muscle relaxation and imagery exercises that you can try with your child. http://www.childcancerpain.org/frameset.cfm?content=nonphar01

First of all, remember to gather as much information as you can from the hospital concerning local support groups, groups that may be able to provide financial aid, local PT and OT therapists (if needed), etc.  A hospital caseworker, social worker or the Children with Special Health Care Needs Center (if your hospital has one) will be able to help you with this.  This cuts down on your legwork and you will not have the time or energy when returning home to seek out these resources.

Make sure you understand your child's cares completely.  This understanding should include what can go wrong and what to do in such a case.  Try to make sure you have practiced new techniques quite a few times in the hospital.

You will want to get your child's Care Notebook updated.  If possible get this done in the hospital.  You will not have time when you first get home and by the time you do, you will have forgotten some important details.  Also, you have access to your child's chart and you have the nurses and Dr's to answer the questions you may have.

For more information on your child's behavior and coping skills upon their return home, The John Hopkins Child's Center Child Life Department put together an informative document.  Please refer to the following link for this information: Guide: Going Home From the Hospital.

We hope that you have found this information helpful.  Surgery is part of the journey.  It may lead to a detour and it may lead to a new and beautiful territory.  Whatever the outcome, we hope that you are able to find some peace along the way.

FAQ's

• I have one child with exstrophy. What is the chance of our having another?
  Once you have a child with exstrophy, the chance of having another drops from 1/40,000 to 1/250 or so. But you must first have a proband (the child with the actual birth defect) before the risk goes up. This statistic is from Campbell's Urology (2008).
• Why does the risk go up after having a child with exstrophy?
  As soon as the gene is found for exstrophy we will know more definitively. Generally speaking, once a gene is expressed (a birth defect happens) it is more likely to be expressed again.