When observing a child’s development, we as professionals often forget the obvious: as a child develops, the parents develop as well. This perspective is hardly minor. Parents are typically involved with their children throughout their child’s life. Parents impact their child; their child impacts the parents. This may seem obvious, but when parenting an atypical child such as one who is born with the bladder exstrophy complex, parents and the needs of parenting must be at the forefront; parenting begins at birth.
Many parents, many childcare professionals, will be able to offer you much advice from their own knowledge and experience when you deal with typical childhood problems with your child; almost no one whom you meet as a parent will really be able to offer much advice about any issues you are dealing with about your child’s exstrophy.
While children with bladder exstrophy will encounter their new environments the way most children might, the exstrophy experience itself will have unique influences on their development. This is not necessarily good or necessarily bad. These unique influences might seem to imply that you, as a parent, will need special skills or gifts.
This might seem scary and terrifying even, especially if you are a brand-new parent. And parents typically expect to have a typical child. The truth is, no one knows who or what any child is when that child is born. No one knows what the future of any child will bring. The unknowns of raising any child can be pretty scary.
However, brand-new parents of a baby with atypical fetal development, such as bladder exstrophy, recognize these unknowns almost immediately. And this usually is pretty scary, sometimes almost paralyzing. Thus, the doctors and nurses treating your child with bladder exstrophy need to be experienced. And those are precisely some of the reasons why we are so focused on helping parents and their child with exstrophy be more “experienced” in their knowledge and questions.
Throughout your child’s growth and development as parents, you will rely on the expertise of those professionals who treat your child. It is important to realize that you are developing expertise in parenting your child as well as in bladder exstrophy. Your child’s family doctor or pediatrician will probably accept your expertise without much difficulty.
On the other hand, other healthcare professionals in the emergency room, or if you are seeing other doctors, will likely know little or nothing about bladder exstrophy. More to the point, you and, with time, your child will know more about bladder exstrophy than most of the professionals you encounter. The sooner you really grasp this reality, the sooner you will be able to guide these other medical professionals in terms of their real expertise vis-à-vis your child: a childhood emergency, say, or sudden acute illness.
This may sound like a burden. But with your experience and knowledge, you will be able to advocate for your child in nearly all situations, and therefore, most importantly, you will be best able to protect your child in unpredictable times or situations.
Read our “Spark Notes” Stages of Development Guide to help you as a parent understand your child’s psychological and emotional needs.