I feel so bad for all of you and your family members that are going through this especially when no one seems to understand what it's like to live this way.
I found this discussion whilst curious about similar problems of my own and wondering if there might be a connection with events around my birth.
I am 30 years old. I was not an Rh baby but had a similar issue, ABO Haemolytic Disease .This is where the blood types are incompatible rather than the Rh, causing a similar immune system response from the mother where antibodies are made which pass into the baby and blood cells are destroyed. Physiologically the potentially dangerous effects on the baby are the same such as anemia and severe jaundice so I think this is relevant to the discussion. The main differences with ABO as I understand them are that it is more common and unpredictable than Rh (can occur in first or any child in no particular order) and it is generally less dangerous except in severe cases or when unanticipated due to checks not being properly carried out by hospital (as was the case with me).
My mother is O+ and I am A- like my father. During pregnancy my mother was given the routine ultrasounds but no blood tests were offered and not even asked about parent's blood groups (ABO incompatibility is not treated during pregnancy anyway but they should have at least identified the blood groups to anticipate the risks and so they would have known to test me immediately after birth). I was born full term weighing 6.4, mother says I moved and kicked strongly right up until birth so she never suspected anything was wrong. On the first day everything seemed fine aside from me having hiccups all day which my mother put down to a traumatic birth (both mother and fetal distress and forceps delivery). But on the next day doctors noticed the jaundice. This was when they finally did tests and discovered the ABO. I don't know what my levels were by then but it was obviously severe enough that they had to do blood exchanges as quickly as they could get hold of the blood (I think it was about 2 or 3 exchanges, the first wasn't enough). My mother doesn't recall them discussing potential outcomes with her but my father mentioned to me some years ago that the doctors had said if I survived I could be severely disabled. They kept me in hospital for 1 month after which it seems there was no follow up despite their previous concerns. It seems to be the case that if a baby doesn't show obvious signs of damage they just assume they are 100% ok and will have no further problems, even though it is known that the damage is a spectrum with varying degrees of severity.
For as long as I can remember I have struggled with things others seem to find easy. I have difficulty with my eye movements (it is even physically painful to look up) so I have trouble seeing all around me. My hearing has good and bad days but I've always had a problem distinguishing between different noises so I cannot hear well in a crowd or if more than one person is talking. I have difficulty controlling my movements and am very clumsy and uncoordinated. My speech is sometimes a bit difficult as well so I have to focus hard on that too, also remembering the right words. As a child I was very overwhelmed by being in school, there was just too much noise and movement all around me at once and I felt constantly bewildered. I also had some cognitive difficulties understanding other children/adults and my responses felt slow, like I couldn't keep up with them despite being intelligent. I was very shy although it wasn't classic shyness, more like a sense of depersonalization. Like my perception of the world around me felt sort of 'fuzzy' so it didn't feel quite real even though I knew it was. Physically I was always weak and sickly. I remember my parents getting hassle from the school due to the number of sick days I'd had in a year just from common colds and such. I was terrible at sports (uncoordinated, weak) and even just climbing a flight of stairs would cause my legs to ache, this was despite the fact I did a lot more running and walking than my peers - I used to run laps around the playground because I rarely played with other children, and I'd also discovered that running or walking allowed me to think much faster. My mother once asked me when I was little why I'd pace the room all the time and I told her: 'Because I need to. It helps my brain to function.'
I had problems with writing, both physically controlling the pen and spelling. I could often read ok if I forced my eyes to focus (with difficulty). In fact I was reading at an advanced level. But when it came to writing I would often forget the order of the letters even in words I knew well. I was often criticized for having messy handwriting despite trying my best, and it always hurt my hands and fingers. In terms of maths it was another odd mix, I could do sums, even very complex ones for my age inside my head and know the answer - but I was completely incapable of memorizing a simple formula. Even to this day I cannot remember how to 'carry the 1', I can look it up and learn again but I just forget after a while. The teachers did notice I was different from other children and told my parents they thought I was mentally handicapped (as in retardation), my parents disagreed so I was given an IQ test and they were surprised to discover I was actually very highly intelligent.
Health problems (sorry if I miss anything):
Digestive issues that have been labeled as severe IBS although they include symptoms not typical. From early childhood there was problems with tearing/bleeding when going to toilet. By age 9 onwards I had intense IBS styles cramps bloating and diarrhea. By my late teens GERD and severe upper-abdominal dull pains occurring mostly after ingesting certain things (mainly spices and even small amounts of alcohol became impossible where I'd previously had no problems). Episodes of nausea and vomiting where a problem for a few years but that was likely due to NSAID medication reaction that made problems much worse. Undigested food in bowel movements, still have diarrhea most of the time. Hemorrhoids since about early 20s. A few years ago developed rectocele hernia (something more typically seen in women after childbirth). I've recently cut out wheat and gluten and this has helped a little with the cramps and bloating.
Chronically and sometimes severely underweight till my mid 20s regardless of calorie intake (and I'm still pretty slim now but then I also have narrow bones: face, fingers, nails, wrists etc are child-sized as if they never grew fully).
Frequently recurring lower back problems started in early teens, became chronic at 19 when MRI revealed abnormal lordosis of the spine. Over the years pain and stiffness spread to the top of my spine, then my neck, then gradually everywhere. I have lots of creaking and cracking when I move my joints, in particular my neck which now makes loads of cracking even with the slightest movement. My fingers and hands have started to curl in like claws, they also have numbness and tingling. I'm fairly sure at this point that I have some kind of osteo-type issue but doctors are unwilling to listen since a very unprofessional, lazy and extremely rude doctor labeled me as having 'Functional Disorder' (basically a fancy way of saying we don't know and we can't be bothered to find out) without even properly examining me.
Worsening tinnitus (ringing in ears). Pressure in ears that sometimes renders me partially deaf.
Palpitations since 19.
Chronic muscle aches since teens (although Magnesium Glycinate supplement has helped a bit).
Kidney stones starting mid 20s.
Migraines since childhood.
Worsening cognitive dysfunction (memory is much worse, attention span very difficult).
Always tired/easily exhausted since mid teens, The addition of mobility issues means my activity is very limited by now.
Systemic tendon problems since last year. In particular right achilles which has a lump where it hurts.
Very sensitive teeth with enamel problems despite rigorous oral hygiene. Bleeding and receding gums.
Dermographism (an allergic skin reaction caused by even slight friction or irritation) has been worsening since mid 20s.
Was told a few years ago I was 'a bit anaemic' despite having enough iron in my diet. I also used to get cracks in the corners of my mouth (a typical sign of anaemia), they went away with the addition of iron supplements.
Tremors since mid 20s in varying degrees. Tourettes-like spasms such as head and arm jerks, sometimes a noise even comes from my throat now when it happens.
Terrible balance and is getting worse. I can't even stand still on the spot. I've been walking with a stick since 19.
In terms of anxiety and depression I have noticed that I've started sporadically getting these feelings sometimes, usually lasting for a few hours then going away or transforming into irritation. It is very peculiar to experience this because it doesn't feel 'like me'. I was always fairly confident and have quite high self esteem despite everything. I do have some mild OCD type compulsions but I try to not give in to them when they occur, and I don't seem to feel too bad for it. Also I think a lot of this is down to not trusting my memory as well as I used to. Like I used to be able to remember when I'd zipped up my bag and not have to check, nowadays I have to keep checking it every so often because I can't be certain I did (and sure enough, sometimes I haven't. That never used to happen).
I do feel as though I am aging before my time. I was never able to have friends my own age for very long, I just don't have the stamina to keep up with them on so many levels. My best friend is in her 50s and in most ways is much fitter than I am. My GP a few years back when I tried to explain how much I struggle with simple everyday tasks said: 'Don't let life pass you by'! I know what he meant but you know, it's not as if I was ever offered a choice! There was so much I wanted to do, and so much I still want now, but when I expend all my energy just to get the little things done and even then still seem to fall behind, I keep wondering if I'll ever even get the chance to fulfill my most modest of ambitions.
One more thing, just to mention I found this article about the affects of Bilirubin-induced neurologic dysfunction (BIND) on neurological development (hyperbilirubinemia is the severe jaundice that can be experienced by babies with haemolytic diseases like Rh and ABO). I found it interesting:
Also reading about the long term symptoms of Kernicterus (the severe and more obvious brain damage that is known to occur from untreated/not successfully treated hyperbilirubinemia) makes me wonder if what many of us are experiencing might be a much milder or delayed version of this more easily identifiable condition. Children with kernicterus have:
Eye movement problems,
Dental enamel issues,
GERD and Impaired digestion,
Conditions like osteoarthritis in young adulthood,
Cognitive dysfunctions like problems with emotions, attention, logic, reasoning, problem solving, but usually not affecting IQ,
I really hope we can find some kind of answers to all this. Have a good day everyone. X