Imagining Life With Donnie

You may have noticed that when I advocate for orphans with special needs, I rarely talk about their actual diagnosis.  Let me take that back, early on I did talk about the medical side, in fact that was almost all I talked about, and it almost always summed up to me saying “it’s not that scary!” because I wanted it to not be scary for folks considering adoption.

But it is scary.  It’s a new normal. And you wonder if you could handle “all that”

Instead of focusing on saying things like “your son/daughter could potentially grow up to live independently depending on the outcome of medical interventions, therapy, adaptive equipment etc” which I, as an occupational therapist, could say till I was blue in the face,  I try to show you a child as I see them.  I see a child who is waiting for a family, a child who needs to learn how to play, how to eat, how to babble, how to love.

But today I’m going to take a moment to talk about Donnie’s medical description to help you imagine what like could be like with Donnie as your son. Interestingly, almost all of his medical conditions match the medical conditions our Roman had on his profile.  Who knows how accurate and up-to-date this medical list is; this country does not have a great track record with accurate diagnosis for orphans.

Congenital malformations of corpus callosum; Other reduction deformities of brain – Okay, Donnie has hydrocephalus, which means when he was born his body was creating more cerebral spinal fluid which may have caused the ventricles in his brain to expand.  Any MRI of his brain probably shows brain deformities. There is no way to know how or if those brain deformities will affect his development, IQ, or potential independence.  Keep in mind also the CP and effects of institutionalization and you’ve just got to know you’re going to be working through a lot of unknowns. 

Congenital hydrocephalus, unspecified – This means he was born with hydrocephalus, it didn’t occur later on after birth.  It does not say if he has a shunt or not, but his head did not appear abnormally large when we met him (compared to our Roman’s head which is significantly larger due to his hydrocephalus).  Hydrocephalus controlled by a shunt is not life threatening and our day-to-days lives in the Heath household are not affected by the fact that two of our children have hydrocephalus.  

Cerebral palsy, unspecifiedCP is about as broad a diagnosis as they come.  There’s a good chance you know people with CP, but if you want to know more I’d suggest you check out the CP foundation.  I also love these resources for understanding CP (not really about CP itself, more for seeing people with CP as being people like you and me) 

Atrial septal defect – This is a hole in the heart present at birth.  This can close naturally as a child grows, or may require some medical intervention but can be treated with few complications. If Donnie had this diagnosis at birth, it could very well be that it has resolved on its own already but he simply has had an updated medical. 

Congenital deformity of hip, unspecified – Both Angelina and Roman had this diagnosis on their profiles.  For Roman it ended up being that his hips were weak due to poor nutrition and neglect, he did not have any leg muscles.  Now that he is getting great nutrition and love, his hips are growing stronger every day and will not require intervention such as splinting or casting.  Who knows how they add this diagnosis to the charts of the children. Based on my personal observations, this description appears on most children’s profiles who have mobility challenges regardless of hip formation.

Check out Donnie standing in this picture! He has AFOs on (clearly too big, probably rotated around any child who needs them during therapy in the orphanage).

Convergent concomitant strabismus; Other disorders of optic disc – This could be from a host of things.  One option could be effects from pressure in the brain from hydrocephalus.  Or it be linked to CP depending on what areas of his brain were affected.  Or it could be due to neglect; when babies spend all day every day staring at nothing, the eye muscles atrophy.  Both Roman and Angelina had this same description on their profiles.  When we met Roman, his eyes were unable to focus to such an extent that we questioned if he had any vision at all.  Guess what? Since being home that has almost entirely resolved without interventions! Our simple daily life has been enough to change his life.  We have eye appointments with a specialist in January. It may be that there are ways to improve their vision, or it may be that their vision is functional enough for independence. (Angelina really really wants blue glasses!)

Now you see why it’s so hard to unpack a diagnosis and try to see a child only through that lens.  There could be things that are resolved or were misdiagnosed to begin with, there could also be unexpected things that are not diagnosed that blindside you later on down to line.  That’s the truth of it.

If you are wondering if you could be Donnei’s parent, or a parent to any child with special needs who is waiting for a family, take a moment to watch Zach Anner share a story about his own mom.  I’m giving you fair warning that you may cry, I always do with this story.  Donnie needs parents who can give him the freedom to be who he is, not what his diagnosis currently confines him to.

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