As parents, it is important to understand that the age of children and adolescents has a strong influence on their perception and understanding of their bladder exstrophy. Their lives are deeply rooted in family, school, and peer relationships. While acceptance and understanding of their birth defect comes with maturity, it is essential to provide the psychological support that your child needs at each stage of their development through bladder exstrophy.
Here at OKC Kids, we are dedicated to supplying children and parents with the tools and knowledge they need to succeed in their battle with bladder exstrophy. We also understand the psychological toll that bladder exstrophy may have on parents as well, and our expert team, led by Dr. Kropp, is here for you every step of the way.
That is why we have created this Stages of Development “Spark Notes” to quickly provide you with some information to better understand not only your child’s psychological development through bladder exstrophy but their normal development through life as well. Although, it is important to note that every child is different, and every child develops at their own speed. These stages are not set in stone by any means, instead, they are intended to provide you with a broad idea of what to expect through your child’s development.
Year 1
During the first year of development, your child is going to experience rapid physical growth, nearly doubling his/her weight by four months and tripling their weight by the end of the first year. Additionally, you should start to see the development of certain motor skills as well as massive jumps in cognitive and emotional development.
In this section, we set out to provide you, the parents, with information about your child’s normal development as a newborn, along with some possible challenges that may arise as it relates to their bladder exstrophy. Additionally, we wanted to provide you with any surgeries your child may have during this time, as surgeries and procedures can certainly play a role in your child’s development. Lastly, we offer some suggestions that parents can use to potentially help ease the challenges that may be imposed by their child’s bladder exstrophy.
As always, we want to clarify that every child is different and will develop at their own rate. It is important to reach out to your child’s primary care physician if you have any concerns about your child’s development.
Physical Development
- The ability to lift their head up while lying on their stomach
- They will begin to reach for objects
- They will gain the ability to roll over and sit on their bottom
- They will begin crawling
- Later, they will start standing without support
- Near the end of the first year, they may begin to take their first steps
These motor skills may come with certain challenges as they relate to their treatment of bladder exstrophy. Some children may need to be placed into tracts or other immobilization devices to restrict the movement of their lower body while they heal. This may cause a delay in their physical ability to crawl, stand, or walk.
Cognitive/Emotional Development
On the other hand, your child may not be impaired from mobilization properly, which could cause detrimental consequences and setbacks on their road to recovery. In addition to motor skills, you will begin to notice distinct cognitive and emotional developments in your child:
- The ability to imitate
- They will begin to babble and say things like “mama” and “dada”
- They will begin to recognize their name as well as specific gestures
- They will start to develop separation anxiety from you and other caregivers
- They will also develop stranger anxiety which may peak at the end of the first year
- By the end of the first year, they may have the ability to speak nearly 10 words
Again, the treatment for your child’s bladder exstrophy may present challenges to the proper emotional and cognitive development. The number of appointments and overnight stays can cause sensory overload for children of this age group. Furthermore, the increased number of interactions with the health care team, as well as procedures and tests that may cause stress or pain, can produce challenges with trust and attachment in your child.
Possible Surgeries
- Modern Staged Repair: This will consist of two surgeries in the first year
- Initial closure/repair of the bladder and proximal urethra (occurs in first few days of life)
- Completion of the Epispadias repair, the portion closer to the head of the penis (occurs around 7 months)
- Complete Primary Repair: This combines the two surgeries into one
Challenges in Development
- Immobilization/Traction after surgery may delay crawling, standing, or walking somewhat
- Any damage to immobilization devices during recovery can lead to a detrimental setback; being sure the devices are protected is important
- Numerous physician appointments and sometimes-needed overnight hospital stays can cause a sort of “sensory overload” for children of this age group
- Increased number of interactions with the health care team (ex: procedures/tests), especially ones that cause stress or pain, may lead to challenges with trust/attachment
Ways Parents Can Help
We know it is a difficult time for parents during this stage of development, but there are several things parents can do to help ease these challenges. It is vital parents use soothing techniques such as; rocking, swaddling, and singing to help their child cope during these difficult times. Providing your child with positive and loving interactions is crucial during the first year of development.
On the other hand, parents still need to be aware that too much touching and noise may be counterproductive if it is over-stimulating to their child. Another thing parents can do is keep consistency in schedules and routines for their child, as this is important throughout many, if not all, stages of development for children with bladder exstrophy.
- It is vital that parents adapt soothing techniques, perhaps rocking or singing to or caressing their child during stressful situations, to help their child feel safe.
- It is generally best not to over-stimulate or “rev up” your child during such situations; noise, for example, and excessive activity in the area may be counterproductive if it is over-stimulating your child.
- Thus, being calm with your child (and that is a learned skill!) and being soothing when others are over-stimulating your child — such as a physical exam or a postop visit with an exam or touching of the incision or tubes.
- Establish and maintain schedules and routines: there is too much chance that exstrophy issues might interfere with routine by themselves and suddenly. Routine offers most kids a sense of safety and stability but tends to be especially important throughout most of the development in kids with exstrophy.
- Whomever you are dealing with, please do not be afraid to speak up and ask questions. You need to have solid answers — otherwise, you may need or seek additional help/resources during your child’s exstrophy development.
- Seek outside help or second opinions if you feel ill at ease about what is happening with your child. Most surgeons with experience treating exstrophy will gladly suggest outside resources or even people for 2nd opinions if you ask.
Lastly, you should not be afraid to speak up, ask questions, or seek additional help/resources during this difficult time in your and your child’s life.
Year 2
Physical Development
- Continued maturation of motor skills
- Emergences of hand preference
- Climbs stairs, throw/kick balls and toys
- Begin to feed themselves with forks and spoons
Cognitive development
- Inferential thinking
- Huge language development
- The ability to use 200 words
- Ability to speak in two-word sentences
- Telegraphic sentences
Emotional/Social Development
- Self-awareness and self-recognition will begin to develop
- Their thinking is very self-centered
- They will begin to understand right from wrong
- Begin to feel empathy for others
- May begin to see their play change from solitary play to parallel play
Early childhood (2-7 years)
As your child enters preschool and school age, socialization becomes a major factor in their development. Your child will begin interacting with other children in almost all aspects of their life, whether it be through school, sports, or any other extracurricular activities. Your child may not appear to have massive jumps in physical development around this age group, but they should ultimately see huge leaps in cognitive and emotional development. Namely, in the formation of relationships/friendships and, notably, a struggle for more separation from you, the parents.
As always, we want to clarify that every child is different and will develop at their own rate. It is important to reach out to your child’s primary care physician if you have any concerns about your child’s development.
Physical Development
- May see a slow-down in physical growth along with a decrease in appetite
- Age 3-5 years is the big time for bladder and bowel control
- The child will continue to show improvements in fine and gross motor skills
- Begin to groom and dress themselves
Note on bladder/bowel control
- Ages 2.5 to 3.5 years or so are typical ages for most children to begin to be interested in bladder and bowel control. Children with exstrophy will likely experience frustration as they attempt to keep up with their peers and, likely, fail at least at bladder control.
- Constipation may be a real (but difficult-to-recognize) problem because of surgeries, anesthetics, or certain medications for exstrophy
- Parents need to realize that any bladder or bowel control issues are not real failures — their child wants to have control.
- When a child with exstrophy perceives failures in bladder or bowel control, they will likely feel frustrated. If doctors, nurses, teachers or relatives push them to achieve control or criticize them, they may finally become demoralized. In this state of mind, kids will often deny they have a problem (wetness that shows through their clothes), refuse to change clothes, or simply stay wet but won’t acknowledge or discuss it
- Parents (again!) will need help in developing skills to assist and reassure their child throughout these behaviors and feelings, even though parents are likely to be frustrated as well.
Cognitive Development
- Massive jumps in all forms of memory
- Begin to form their earliest memories
- Begin to repeat numbers in sequence (~4) and draw shapes
- Still extremely egocentric thinking
- Imagination will run wild, which can be seen in their play
- Language Skills will continue to expand along with sentence length and vocabulary
Emotional Development
- Your child may begin to fight for separation and struggle for individualization
- Begin to experience emotions like jealousy, shame, guilt, and envy
- Begin to develop self-soothing techniques to regulate emotions
- May begin to experience nightmares and other fears
Social Development
- Should see a massive increase in social interactions
- Begin to understand sharing, taking turns, and other social norms
- Will be strongly influenced by their friends and peers
- May begin to start to experience romantic feelings for others
Possible Surgeries
- Bladder Neck Reconstruction: surgery to allow proper filling, holding, and voiding of urine from the bladder. And almost always involves a bilateral ureteral reimplantation procedure to prevent kidney infections.
Challenges in Development:
- Your child may experience heightened anxiety when around strangers or during hospital/clinic settings
- Your child may begin to act out or experience stress when changes in their routine occur
- Your child may have trouble dealing with the lack of control they feel have due to numerous procedures and appointments
- As parents, you should watch out for any regression in development (ex: reverting back to babbling or not speaking at all)
Ways Parents Can Help:
- Try to keep consistent schedules and routines for your child
- Provide constant encouragement for your child
- Always give them the attention they feel they need
- Listen to their complaints and give simple, easy-to-understand descriptions/explanations to them about what is going on
- Encourage your child to participate with other children and partake in other extracurricular activities
Middle Childhood (7-12)
During middle childhood, cognitive and emotional development start to shine through as your child begins to intellectually understand deeper and more meaningful concepts. Your child will begin to contemplate other peoples’ perspectives, which naturally forces them to begin to heavily compare themselves to their peers, an experience that can be difficult for children with bladder exstrophy.
As always, we want to clarify that every child is different and will develop at their own rate. It is important to reach out to your child’s primary care physician if you have any concerns about your child’s development.
Physical Development
- Should see a slow and steady increase in height/weight
- Begin to see permanent teeth come in
- Continued increase in motor dexterity and coordination
Cognitive Development
- Your child will be developing logical thinking (ex. Law of Conservation)
- They will begin to understand the meaning of death
- May begin to see a shift from egocentric language to more social speech
- Continue to see exponential growth in vocabulary
Emotional/Social Development
- Your child will begin to use words rather than behavior to express their emotions
- Continue to see social norms guide emotional expression
- Being able to understand and see multiple perspectives on the same situation
- Being to understand what is fair
- Your child will begin to compare themselves to their peers in many different settings (ex. Sports and school)
Possible Surgeries
- Bladder Augmentation: surgery to increase bladder size to allow for your child to have longer holding periods and decrease chances of VUR/Kidney infections.
- Clean Intermittent Catheterization may need to be placed
- Scar Revisions or Reconstructive surgeries
Challenges in Development
- Your child may have trouble dealing with the extra help they need from you (the parents) due to their Bladder Exstrophy when their normal development is the need to feel more autonomous
- They may have trouble with leaving school and friends for appointments/check-ups due to their bladder exstrophy
- Your child may begin to fear the impact their bladder exstrophy may have on their future as far as sports and friends
- As with any stage, parents should watch for any regression in development (ex: going back to “baby talk” or use of a diaper again or sucking their thumb)
Ways Parents Can Help
- Be there for your child when they are experiencing difficult times
- Encourage open and honest communication about how they are feeling and what they are experiencing
- Help push your child to take command over their treatment and encourage an increase in independence (ex: make them ask the doctor any questions they may have)
- Encourage your child to participate in sports or other physical activities and to build relationships with their peers
- As always, try to keep a consistent schedule/routine for your child
Early to Middle Adolescence (13-18)
Challenges in Development:
- As your child begins to understand more and more of their condition, they may experience extreme stress and fear of the lifetime impact Bladder exstrophy may have on their future
- Your child may start to deviate from their medical treatment and advice
- Your child may begin to feel that their Bladder Exstrophy is what defines them as a person
- They may fall into denial of their condition
- They may experience self-esteem issues when it comes to looks and sexual activity/performance
Ways Parents Can Help:
- Encourage/allow greater independence in all aspects of your child’s life
- Allow your child the privacy they feel they need
- Make sure to urge your child to keep up with their personal hygiene
- Be honest with your child and provide them with straightforward answers to their questions
- Urge your child to use any and all resources that are available to inform them about their condition
- Encourage them to seek and participate in additional support groups
Late Adolescence (19-23)
Commonly, in bladder exstrophy, there is some delay in psychosocial development in both boys and girls, although probably more pronounced in boys. This becomes a little more obvious in late adolescence and as a teen begins to emerge into adulthood.
Thus, teenagers with bladder exstrophy tend to be later than more typical teenagers in dating or having serious relationships. This is not surprising and it is also not necessarily a problem. For any teenager, any adolescent, it is probably better to have the time necessary to deal with their emotions, fears and anxieties before getting serious about someone else’s emotions or needs: in other words, before becoming involved in romance.
Now, some teenagers develop much more slowly than others physically, that is, in regard to secondary sex characteristics. This is not more likely to happen to adolescents with exstrophy, but it can happen to anyone. Whereas early or late physical maturity may make an important difference to a teen in early adolescence, in late adolescence other overall aspects of maturity typically compensate.
In other words, even if a teenager is not maturing physically as fast as their peers, they are very likely to see themself as more in line with their actual age, even though older peers, in particular, may see and treat them as younger because they may look younger. Overall cognitive development – that is, thinking, understanding, making decisions, planning, and so on – may be more important in late adolescence than overall physical development.