This is difficult to predict as surgical procedures are
changing very fast in this field. Your doctor is unlikely to be able to give you
a clear long term plan. The most that can be planned with any accuracy is up to
the next treatment or operation.
It is very important for parents to understand that each child born with Bladder Exstrophy and/or Epispadias is uniquely different. The care and treatment plan by your child’s urologist will be specific to your child’s needs. Parents should also be aware that it is very hard to compare your child to another child who has the condition. Even though some of the children have the same urinary diversion, it is noted that any problems relating to the condition tend to differ from child to child.
As the condition is rare, most people will not have heard or seen a patient who presents the Exstrophy/Epispadias complex. Your childs G.P. (general practioneer), health visitor, school nurse or teacher will probably have never come across it. As your child gets older and you learn more about the condition, you will probably find that you may have to repeat the implications of having a child with it.
Any operation scars will fade, however they will not disappear completely. When children go through puberty, then some of the scars at the front will eventually be covered by pubic hair.
Due to the pelvis being split at birth, the child may present a slight waddling gait as they develop. However this will not be noticeable as the child gets older.
Apart from the plumbing, there is nothing to stop these children from developing completely normal. They are able to enjoy a full active life and can play at most things. Most children may be vulnerable in the groin area. It is therefore recommended that you check with your child’s doctor before any vigorous sporting activity is taken up.
Fertility in males can at times be a problem. At this present time, it is not yet clear how they will resolve this. Recent studies show that exstrophy males have grown up to father children. After normal sexual intercourse, the penis has to stay inside longer. This allows time for the semen to come out slowly as it does not have the mechanism to ejaculate quickly. Studies also show that males who are unable to father children, have successfully achieved this with modern reproductive technology.
Recent studies have also shown that exstrophy females are able to have normal sexual intercourse and are able to have children. Normal pregnancies have been reported and some Exstrophy females have been able to achieve a normal vaginal delivery. Due to concerns with bladder prolapse and to avoid stressing the pelvic floor, some females have had a caesarean section. This is not dangerous if monitored carefully and the doctor will be able to determine if a caesarean section is necessary.
At some stage in your child’s life, counselling may be required, especially in the adolescence. It is important to know that this service is always available and never feel afraid to ask if you are concerned or just want reassurance.
Most children with the Exstrophy and Epispadias complex will need various operations and hospital appointments for regular check-ups. The hospital will become an important part of yours and the child’s life. Most parents often find it very useful to keep a record of the treatment their child has. This will become useful if at anytime you decide to change doctors or you need to refer back to any important issues.
When children get older and become young adults, they will then be transferred to another hospital. This is called a “transition” to adult services. The transition period is often a very upsetting time as the children have grown up with the same nurses and doctors throughout their childhood years. If you have any questions or concerns regarding the transition period, then please make sure you ask a member of the urology team who will be able to explain this to you in more detail.
Planning for more children
The chance of having another baby with the Exstropy complex is extremely rare. If you have any fears or concerns, there are several people who can help and advise you.
The doctor who is dealing with your child’s condition can tell you of the chances more accurately.
Your local G.P. (doctor) may be able to put you in touch with a doctor who specialises in Genetic Counselling. Some parents have chosen this route and found it very helpful.
Some parents who have conceived without seeking any advice before conception are given a specialised ultrasound scan. This normally takes around 45 minutes and it is carried out by a specialist doctor who checks the full development of the baby at around 20 weeks gestation. If you have any concerns, then you can request this procedure thorough your local G.P. or the maternity hospital you attend.
If in doubt, it always best to check if any further tests are available at your local maternity hospital.
Other Siblings
If you have an older child/children, they will have been very excited and looking forward to the arrival of their new brother/sister. As you and your child will have to spend time seeing lots of doctors, stays in the hospital for various surgeries and the fact that younger children may have to stay with friends or relatives, it will be impossible to hide the fact that something is wrong with their brother/sister. If they pick up on the fact that the parents or other family members are worried, then it is only natural for them to worry to, even when they don’t know what the problem is.
Siblings’ experiences will often vary depending on their age, gender and position in the family. Therefore certain issues are particularly relevant at different stages in their lives. These will vary from one child to another and will be affected by each family’s own circumstances.
Information about the condition and it’s implications can at times be difficult especially when the genital defect is involved. It is a very personal thing as to how and when you tell your children.
To assist your further, information can be found at www.sibs.org.uk. This is a support group for siblings where parents and older children can download factsheets to read, share and discuss together as a family unit.
When your child reaches the age of discussing management options, it can at times be a confusing and difficult path for parents. Depending on your childs health, some children may not have a choice. This again can be very distressing for parents. You should always make sure before going ahead with any surgery that you understand all the implications involved when trying to improve your childs quality of life. If your child is offered an option, then you should make sure that you understand all the information on the various options. For example, you should always ask if there are any alternatives to any treatment or surgery your child might have. Research the options that you have discussed and remember that you do not have to rush into making any decisions. If you have any doubts, worries or concerns, then parents have the right to seek a second opinion from any of the Centres of Excellence.
Lastly we would like to re-assure you that we at BEES understand how you feel. WHY you may ask??? Remember that we live with this to and have experienced the many paths you or your child may walk. We to have felt the fear, the unknown, the confusion, frustration and the upset. Here at BEES, we offer empathy, patience, understanding, shared experiences…but most of all we offer you the joy, the laughter and the great gift of having a child with this condition.
