Medical Bilirubinemia

[ags1]

I was one of the last generation of children to be born with Rh disease before the widespread availability of preventative treatments. I was born premature and blue and needed substantial blood transfusions to prevent bilirubin toxicity. I certainly avoided the worst effects, but I do think my brain took some damage, with moderate losses to hearing, fine motor skills, and difficulties with language, sequencing and working memory.

My first days were of course spent desperately sick from being poisoned by bilirubin (the chemical that gives bruises their color), in a lot of pain, recieving transfusions and away from my mother. Obviously this early distress is unremembered, but there is some evidence that early experiences like this can sensitize the child to subsequent traumas. I am sure many other people are born in similar situations, and it's worth remembering that even the earliest experiences of our lives can have a lasting emotional impact.

 

[ags1]

I was shocked to learn the other day that 50% of kids with my background will have permanent neurological consequences. So I have gone from "there must be something wrong / no i am imagining it" to realizing that a neurological issue is the most likely explanation.

I have severe anxiety from autism, but I was dumping everything on the anxiety. Fear of falling over - anxiety. Can't learn to ride a bike - anxiety. Can't keep up with the road scene while driving - anxiety. Now it's flipped - of course I was anxious - my brain couldn't cope with the activity and that made me anxious!

 

[arfie]

it's worth remembering that even the earliest experiences of our lives can have a lasting emotional impact.

i solidly agree. i started psychotherapy in 1972 with trauma induced amnesia. i couldn't remember my childhood, but i was acting it out like an ant on a colony pheromone trail. over the decades of learning how to process the repressed memories, i learned some glimmers of how interwoven our minds, spirits, bodies and life experiences are. i don't need to remember learning the ABCs to read like a doctoral student. equally, i don't need to remember the 9 months in my mother's anxiety ridden womb to act out her anxiety.

Now it's flipped - of course I was anxious - my brain couldn't cope with the activity and that made me anxious!

this sounds like a recurring theme i have experienced throughout my decades of recovery. when i start to understand one angle, ^it^ flips and throws me a brand new angle. my psyche resists the change every time. when i can unclench my fists and approach the change with a spirit of learning, healing happens. or so i believe. just believing.

side note
this approach has helped me develop a new life goal. i hope to be learning something new on the day that i die. just hoping.

 

[Torch]

I certainly avoided the worst effects, but I do think my brain took some damage, with moderate losses to hearing, fine motor skills, and difficulties with language, sequencing and working memory. I was shocked to learn the other day that 50% of kids with my background will have permanent neurological consequences. So I have gone from "there must be something wrong / no i am imagining it" to realizing that a neurological issue is the most likely explanation.

That sounds like a difficult way to go through life. Have you confided your suspicions about the lifelong consequences to anyone close or important to you? Or mentioned your insights and concerns to primary care doctor?

Obviously this early distress is unremembered, but there is some evidence that early experiences like this can sensitize the child to subsequent traumas.

Childbirth in general strikes me as traumatic. While I don't know much about how childbirth affects an infant, I can agree that additional birth complications probably don't make acclimation to the world any easier.

I have severe anxiety from autism, but I was dumping everything on the anxiety. Fear of falling over - anxiety. Can't learn to ride a bike - anxiety. Can't keep up with the road scene while driving - anxiety. Now it's flipped - of course I was anxious - my brain couldn't cope with the activity and that made me anxious!

Could you explain what you mean by 'flipped'? Have you taken any steps to address your autism or anxiety? Your fear of falling over may indicate the anxiety is considerably debilitating.

 

[ags1]

That sounds like a difficult way to go through life. Have you confided your suspicions about the lifelong consequences to anyone close or important to you?

I've talked about it with my family. I am thinking of speaking to my doctor, but there are no treatments.

Could you explain what you mean by 'flipped'? Have you taken any steps to address your autism or anxiety?

Autism and anxiety go together very often. I am taking antipsychotics and antidepressants that help a lot. But what I've realized is that some of the things I struggle with are not caused by anxiety, they cause anxiety because I have a genuine physical struggle with those tasks.

 

[ags1]

For example, I no longer drive because I don't feel I could do it safely. I told myself at the time it was because my anxiety was too severe. I would be driving and trying all sorts of mental techniques to keep myself calm. But what I was really doing was ignoring the strong sense that driving was physically too difficult for me. I didn't need better relaxation techniques. I needed to stop driving.

I would have the sensation of being drunk - like I couldn't coordinate effectively or be sufficiently aware of the surroundings. I have that feeling at other times - when i try to ride a bike, or get pressed into dancing. I have the strong sense I will fall over or crash. I just don't have that real-time coordination that other people seem to have.