Adult suvivors of Rhesus Haemolytic Disease

Hi Rex,

Thank you for the welcome. I'm also sorry about everything you are dealing with. I agree that more discussion is needed. It took me 47 years to start to think about it as a possible link to my problems. It makes perfect sense though that if we were dealing with such a harsh enviroment in utero it could create lasting physical and mental problems. I did just find a study that linked rh incompatiblity to schizophrenia. That's all I've found so far though. I realize there really isn't anything to be done about it ,but it would be nice to know more.  Anyway, I rarely post online, but the reason I did is that I do hope for information. I'm happy I found this place.

Hi Paige, I write on behalf of my

34 year old daughter as you have probably seen, and like you I am trying to find as much out as I can to support her as long as I possibly can. Unusually, she was affected in spite of having the anti- D which you may have read earlier was not administered properly and in spite of the medics knowing I had produced antibodies and that she was being affected in utero and crucially just after birth, we/ she was overlooked and no transfusion offered. I was told not to have a third child when I was pregnant with her. Like you, she is anxious and has OCD based IBS. She is also overweight and struggles to socialise with her own age group. She is great with older people who are able to make allowances and have a sense of humour as she has. As a young child she was very shy. I can find very little research. Perhaps there are very few survivors but I doubt it......just that medics don't seem to see it as a condition but a series of unrelated issues?

I do hope we can all share information and support each other. Take care

My previous entry should not read OCD based IBS but OCD and bad IBS!

Hi Christine,

I am sorry about all of the struggles your daughter is dealing with. She is fortunate to have such a supportive mom.  I don't know how far you have gone into researching why the anti-D didn't work. Like your daughter I was a very shy child too and we do both suffer from ocd and anxiety. I also have some mild ibs problems. I'm just starting to delve into this. We do all seem to be in a minority so hopefully we can as a group come up with some answers and raise some awareness, and of course support each other .

Thank you for this information, Paige and for sharing it 😀

Your welcome .

In relation to daughter....34 years old, 2nd child of RH negative Mum and RH positive Dad...Mum did not receive effective 'anti D' and daughter's post birth jaundice went untreated...no transfusions....so RH disease

Symptoms:

Extreme shyness as child

Difficulty 'fitting in' at school

Marked difficulty staying on task...ADD?

Dyspraxic like symptoms ..... balance, poor muscle tone, poor coordination, fear of slipping, of open stairs etc.

Poor arithmetical skills...no 'feel' for the value of numbers (super speller)

Severe bloating and IBS symptoms..daily stomach pain

Inability to organise self, belongings, spending etc.

Depression

Anxiety, more recently OCD traits

Overeating

Lovely person

Christine,

I'm happy your daughter is doing wonderful despite what she's up against. It's SO difficult and she's so fortunate to have a Mum like you! Thank you for adding to the discussion/description of symptoms.

For the 'record' I forgot to add fybromyalgia and constant fatique (could be just part of the depression?) to my list BTW.

My mother disliked my overwhelming shyness as a child and my inability to fit in. She criticized me... So we will add that to my childhood symptoms as well. I did have great math skills (thanks dad) but spelling was average.

About the math - check into dysgraphia as my daughter (24y/O) has that. She can't even read a face clock or do rote math but was not an RH baby.

Also - with my bloating and symptoms similar to IBS: I recently took a 'bacteria overgrowth' test and had very high levels of bacteria overgrowth in my gut. They prescribed flagyl and it really helped!!! It was about a 4-5 hour in office test and I was in a lot of pain so the nurse saw my 'symptoms in action' but it was worth it!

Take care and smiles and good thoughts to you and your daughter!

Jenny

Thank you for your message. I appreciate it! And for the idea re-bacteria overgrowth. I forgot to list constant tiredness, so much so that she sleeps every afternoon.  Take care and kind wishes to you. 🙂

Christine,

I need to say that I believe your daughter is very blessed to have you as a mother. I also have to say I believe a Drs. obligation upon saying 'congratulations! You are going to be a mom!' Is to find out the blood type of both the parents.

I know tests include those for Down syndrome and gestational diabetes and pre eclampsia and genetic diseases after birth but maybe because I'm O+ I wasn't asked my husband's blood type? What if he was O- ? As a survivor and a person who has tried to research this disease and it's after effects I don't even know if a (+) mother with a (-) father or (-) mother with a (+) father of any blood type can produce this problem.

If I don't know the exact answer with 100% certainty (I believe it's any blood type with (+) (-) incompatibility) - how can a young woman first pregnancy with no thoughts or concerns about obscure blood police negative type know to tell their dr 'I need this shot when I give birth bc my baby's blood type is opposite mine.'

We kinda expect our Drs. To know and take care of these things but it's up to us to educate the Drs. sometimes.

Just my thoughts here, blowing in the breeze.

Take care

Jenny

I (RH baby) also have SIBO and my daughter has had so much trouble learning handwriting, arithmetic, and reading a clock despite being very smart.

Hi All,I have just found this site and am so interested as I too am one of the lucky babies RH that survived.I was lucky to recieve a complete blood change via a machine brought over from the States while still inside the womb,this was done a few times and now have a blood group O positive.Apparently this was pioneering and an article written in the Sunday Telegraph.This was 19th Feb 1967,I was born 10 weeks early,weighed 2Ibs and was in the incubator very poorly,so much so I was Christened hurriedly as they were sure I would not survive as had problems breathing,I remained there for over 2 months and my Dad always said that I was lovely and brown from the UK light that he wondered if they had brought the right one home lol.I too have felt different,had trouble reading,telling time,concentrating,very shy and would find it hard to join in,my mum always said that I would watch before joining in games etc.I had severe eczema when a baby.I have always worried and been very sensitive to people's moods and sometimes too easy to please,hate shouting and raised voices. suffered depression,always felt tired that it's a common joke I like my afternoon siesta, so it kinda makes sense!!!!

I too had problems at school,similar to your daughter,tiredness, irritability because I need a nap

HI

Because I have avoided Allopathic Dr's for most of my life I do not have many names for what has happened to me .. and as far as my bones and memories go I had the added issues of a violent psychotic mum and alcoholic dad so dysfunctional family life.. so had the added pyschological processing to do to find unconditional love and let it all go ...

Came out bright yellow, rushed straight to 24 hours total transfusion..in newspaper apparently as that was all anyone could find.

Given to nurse and found starving after three months as Dad had nervous breakdown as I came out

Given away at 11 month for a month because I would have been a nuisance on holiday

Almost died of antibiotics aged 6 .. everything closed except windpipe. Endless allergies after that to seemingly anything, tinsel, cold air, apricots, so spent hours up at night in bleak boarding schools from the age of four to 16 running my inflamed arms under cold taps. Very allergic to almost all allopathic medicine and meat. now going off wheat and other things. less appetite, intestines do not feel quite as happy anymore . one dose of secnidazol gave me huge rings of fungus on my back for three years.. aside from brown urine, white stools and a strong sense of liver and kidney distress.. a few days at the sea and my skin is thick itchy lumpy leather.

Severe depression by aged 16 Had a spastic colon , generally anxious. but learnt to chill and not be anxious by living in Africa

very Loose muscle tone and floppy ligaments

Congenital kidney malformation, Once passed a stone, lots of grumbling, mild hydronephrosis

Weak enamel and teeth .. all gutted and filled with mercury aged 11 or so .. had them removed by quack London Dentist who never told me white fillings will kill my teeth

Spent ten years from 40 - 50 re-membering all the suppressed childhood and teenage memories .. lots of hallucinating.. so grateful to the overall mind which managed to hold it roughly together

50's were great

inward and spoke little until I was 20 or so .. always said the wrong thing..

Misplaced bones and ligaments stopped me dancing @ 20 which is what I wanted to be

Work with energy

Poor circulation

Right eye pupil does not close

Sure to have osteoporosis as fractured many bones recently and x rays showed extensive arthiritis.

Far out mental states, ( never drank alcohol or took recreational drugs as felt my connection to reality was already very slim )

60's seem to be a bit more challenging. As if I have fewer options and that I need to pay attention and figure a few more things out .. I do think Energy medicine and qi gung really helps me keep my whole energy up..

Something not quite right in lower right gut, something awry in throat... interested in looking up GERD and Barrett's?

Try to work with everything wholistically while being as normal as possible.. been so helped by Bicom , acupuncture , energy medicine, herbs, Frankincense resin.. etc.

Grow organic vegetables ...drink far too much black tea

Cannot digest most fats.

concentration and memory getting less consistent and linearly stable

Seems to be going quite fast

Rest is all good .. really love life and so so so so so so grateful for all who have gotten me here