Persistent Cloaca Syndrome

This is a very rare syndrome. Perhaps less than 1 in 200,000. A so-called "rare disease". Well, actually it’s not a disease, it’s a malformation. And it is called "syndrome" because it manifests itself through various symptoms. Specifically, it consists of an anorectal malformation with communications between the urethra, anus and vagina in the case of girls. Just like birds defecate and urinate all mixed in the same conduit called by zoologists: cloaca.

Now this malformation is derived: it may affect kidneys, reproductive system and spine. This involves not well formed vertebrae and therefore kyphoscoliosis, ie, a column is twisted in several undesirable ways.

Years ago, a child born with this malformation didn’t live many years: infections and lack of medical knowledge impeded solving it. Currently, however, it is detected and treated with reconstructive surgery, ie surgery on each of the partial problems that the patient has.

However, there is no guarantee that it will be properly fixed. In the case of our daughter, they have operated her 17 times in 12 years and they couldn’t fix the spine. And so, this syndrome becomes more than a malformation and some surgical procedures. It becomes something that goes much further: motor difficulties that have ended in a paresis on one leg, ie paralysis. Therefore, it has become part of a much broader and recognized group, the group of the physically disabled, and those who need to go in a wheelchair. She has been sitting in a wheelchair for almost two years.

And her life, like so many disabled and those affected by the Persistent Cloaca Syndrome, is very hard, difficult. A lifetime of effort to do what others can do effortlessly. A life that will be limited from the possibility of certain experiences, family experiences or working experiences. She just may not have the option to work at certain jobs, she cannot do most sports or activities that require physical autonomy.

That's why we would like to call out for reflection on issues like these. Do not turn your back.

 

Let's help them enjoy fulfilling lives with what as we can do.