I agree that there is very little information about this condition. I was born with it and apparantly spent 2 months in an incubator. I would like more information on possible life long problems as a consequence of having this disease in infancy.
I am 34 and have suffered all my life with low immunity, fatigue depression and anxiety and general ME like symptoms. I suspect there is a connection.
I am a rhesus - mother, pre pregnancy with my son i had an ectopic pregnancy so am pretty much convinced i was sensitized, i then fell pregnant with my son, i carried him as normal until approx 6 months, then he stopped moving, so as a concerned parent i went into the hospital, they put a heart rate monitor around my waste and told me :hes just a lazy baby!
then my midwife got concerned as he seemingly was not gaining weight, again she just said : eat more pasta.
I was not given any blood tests apart from 12 week routine test, and was not made aware of the results.
i went into spontaneous labour at 37 weeks and had my son 4 pound 11 ounces- very small even for 37 weeks, it was deemed that my placenta had possibly stopped working, i did not receive any blood test after my sons delivery and was not made aware if a coombes test had been carried out.
my son was born aneamic, with a hernia on his belly & didnt suckle and so could not be breast fed, he instead had my milk and then was fed for two weeks in hospital via an NG tube before i was able to ween him onto a bottle and get them to let us out 
he suffered terribly as a child, at first they thought he may be deaf but
passed his latter test? he has an alternating turn in his eye, is small for age, still has his hernia, has lax joints throughout his body- apart from his knees where he has shortened tendons- this only found after i requested a second opinion physio appointment after he was suffering from extreme pain in his knees.
I absolutely feel like i am banging my head against a wall, THEY (the NHS) are assuming my son has a 'chromosonal abnormality' and are very much on my back about having him enrolled on a Dysphering development disorders study (thousands of pounds of tax payers money) so i sent them a letter asking them to use his blood that they already have just to test my theory that in fact my son has rhesus disease, his consultant shurugged off my concerns saying "i dont think that plays any part here" and now his genetist has completely fobbed me off sending me a letter 8 weeks after my initial query stating "i do not think that rhesus incompatability can explain ************* problems but i can understand why you asked us to consider this" well if they can understand why will they not test my sons blood???
i have contacted every department my son has ever been to throughout the nhs asking them if my sons blood group is on their system and they all say they do not have it! now surely if a coombes test had been carried out surely they would have it on record? so did they even carry that out?
It is also worth noting that, my son as a child suffered from seizures and muscle spasms, which were dismissed until he had a muscle spasm infront of his developement check consultant, and so i have it in writing that they saw this and dismissed it.
My sons consultant also blatantly told me that my sons blood test results had come back absolutley fine, then when i received a letter she had written to his genetist about the appointment she goes on to say his ferritin levels are borderline- so borderline aneamic then!!!!! but didnt even think to tell me this so i could as a good parent up his iron content.
BANGING MY HEAD AGAINST A WALL AND SO WILL HAVE TO HAVE A PRIVATE CONSULT WITH MY SON JUST TO SEE IF MY SUSPICIONS ARE CORRECT.
they are all very hush hush about it, and wont oblige to just letting me know what my sons blood group is.
as a child did you have a blood transfusion?
have you heard from anybody else with the same as yourself?
what are symptoms in later life? as i am trying to do all i can for my son but feel i am getting no help.
Hello
I am the mother of an officially undiagnosed 32 year old. She was my second child and I was advised not to have any further children. In spite of my daughter having jaundice in the first week of life and knowing that my anti D labels were very low, no transfusion was recommended and no real monitoring of my daughter took place. The result is that she has always struggled with life....regularly tired, difficulty with school and getting on with her peers, IBS, panic attacks, anxiety, poor muscle strength, poor sustained attention, more recently OCD traits. She is a lovely girl who just wants to live a normal life. I feel that if she had been monitored properly at birth, all of this would have been avoided and she would have been able to live an independent life like her elder brother.u
U probably won't ever see this but I hope u will. I spent a month in an incubator 50 yrs ago... I had 5-6 blood exchanges - my parents never made a big deal about it but my mom told me she feared my depression was from being so sick in-utero and after. My mom passed and then I got real sick a couple years later with broken bones-osteoporosis- anemia the doctors couldn't figure out why... Plus many other debilitating illnesses leavings unable to work. My dad - in the midst of losing his wife and seeing me go from an active mom working full time and physically active to being horribly disabled... Said "the pediatrician said this may happen in ur Middle Age". What?! I get my parents saying nothing to not give me like placebo effect... I already had depression anxiety and multiple bowel issues that we were told were abnormal /genetic...
SO WHAT THE HELL!!!
I believe a dr in the 60's said I'd have trouble given their own medical knowledge and history - but I'm on disability now! So ashamed! And I know what my dad finally revealed to me... Comments?
I don't drink pop, I eat well - fresh vegetables, lots if proteins and vitamins - yes I ate fast food when desperate while working 40-50 hrs a week. But my friends bones aren't breaking and they aren't anemic and in pain daily and osteoporotic before menopause!!!!!
So sorry to hear about your difficulties. It seems that no one in the medical profession accepts the symptoms of rhesus disease in those who have been affected. My daughter suffers too and obviously the prognosis is not good for the future. I do hope that you are getting as good treatment as possible to help with anaemia and pain. Don't be ashamed about disability, it is not your fault that you have health problems and you have obviously been a 'worker'. Take care.
Thank you Christine,
I hope your daughter is okay - how old is she? Please tell me more if u will? I am fortunate to have a good group of doctors... But they don't have any diagnosis... Only symptoms they each are treating. I believe that since now the medical community can usually treat RH disease before it becomes a problem... (Or they think once the child survives then there will be no long term problems) ... That there is no money in doing research and/or treatment. Sadly money and potential money seems to be the driving force behind any type of research. I do hope your daughter is okay and please let me know. Thank you, Jennifer
Hi Jennifer, my daughter is now 33 and as such, I think she is very unfortunate to have been 'overlooked' in terms of not being properly treated in utero or post birth. Blood tests taken after my anti-D injection after my first child (not administered properly as I felt liquid at the site) revealed that the anti D had not done its job and as such, my daughter should have been closely monitored especially when she developed jaundice soon after birth. She was quite lethargic as an infant and has had poor muscle tone all her life, plus bad I B S etc.etc. It affects every part of her life. It is such a shame that the medical profession seem to have no understanding or help for RHDisease affected people even if there are very few affected. I assume it is all too late now and that like you, individual symptoms are medicated but that is it.
Take care.
I'm so sorry to hear about your daughter. I believe that Drs. Believe that transfusions etc are common and that it is a treatment without repercussions (other than when they didn't test blood for HIV/Hep B, etc). Also the symptoms seem to be attributed to other problems... No one has connected the dots that symptoms maybe clustered and be traced back to birth. I wonder about the damage done to the fetus when there is insufficient iron and blood supply to a growing baby??? Also - I've recently been diagnosed with a bacterial infection in my small intestine that mimics IBS. I've been told I have IBS and my last Gastro said I don't have IBS bc I wake in the middle if the night and go to the bathroom for hours... Despite the symptoms are similar to IBS. Night waking is not one of them. Anyway - I did a 4 hour breath test for bacteria and it can be linked to birth. So just a thought for your daughter. This infection causes aplastic anemia and not absorbing nutrients.
Good luck and god bless
Jennifer
I am a 59 year old male who was born with RH disease. My mother was actually warned not to have another pregancy after my two older sisters were born. She really wanted a son so she took the chance and ended up having me. I apparently had two complete blood transfusions within the first 48 hours of life. I have had numerous health issues since the time I was young and always wondered what effect my having the RH was having and has had on my health. The physical issues are too many to list but in terms of psychological problems, I suffer with depression and extreme anxiety which I am taking medication for.
Hi Rex
Sorry to hear that life is a struggle for you. I suspect that your difficulties could relate back to your RH disease but it is very hard to prove anything isn't it! I hope you are coping.
Rex,
I'm very interested in what you describe. I'm sorry for what you are experiencing. I don't know what you read about me, but I am 51 and had 6 blood exchanges (emptying out all my blood while introducing new blood) soon after birth. I was taken a month early or Told I would have died and then wasn't touched for about a month. I have depression and severe anxiety as well. I have recently ended up on disability because of all the multiple medical problems I began to have. I cannot find any medical literature on RH and long term problems. My father finally told me - after I began experiencing so many obscure medical situations that made no sense - that my pediatrician said when i was discharged from the hospital as an infant - I would most likely begin to develop medical problems in middle age. I look forward to hearing more from you. Take care, jenny
Hi Jenny,
I'd be more than happy to go into more detail about my experience with RH. As I said in my earlier post, I was a child that in all honesty probably shouldn't have been conceived, at least that is what my mother's doctor warned her before she attempted another pregnancy after my ywo sisters were born. This was 1957 before medical technology knew how to properly deal with RH inutero. The only thing I know for sure is that I had two full blood transfusions within the first 48 hours of life. In kindergarten It was discovered that I had moderate hearing loss in both ears which is, from what I understand, a common ailment with RH babies. When I had my tonsils removed at age 5 the doctor also removed my adenoids which helped with the hearing loss but did not eliminate it completely. I had an unusual number of ear infections as a child and even into my 30's. Two of them so severe that my ear drum ruptured. as an adolescent, it was discovered that I had a bulging disc in my neck that through the years caused anything from a slightly sore, stifff neck to near paralysis of my left arm.That was followed by a severely bulging disc that left me temporarily unable to walk. As the years went by I had more and more health issues. ADHD that went undiagnosed until I was in my early 40's which looking back on was the cause of learning disabilities despite the fact that I had a higher than average IQ. I will try to list all of my medical issues in chronological order. A severe staff infection when I was about 11 years old that left boils on my backside and left me bed-ridden for an entire summer. Mild depression that worsened as I grew older and a generalized anxiety disorder(GAD)that developed soon after the depression and joint problems with my right elbow and both shoulders. Starting in my late 20's I started having issues that are normally associated with people that were 30-40 years older than I was. Hemorroids, hernias, diverticulitis with occassional flair ups of diverticulosis, hip pain which is probably arthritis. Tinittis, or constant ringing in both ears, Angioplasty with the placement of 5 stents when I was 47. Maybe the worst of all is bi-lateral neuropathy of the pudendal nerve(you may need to do some research on this one,It's a very cruel disorder.) High blood pressure, type 2 diabetes, COPD, a recently diagnosed melanoma on my right shoulder that was successfully removed, GERD that has left me with a pre-cancerous condition in my esphagus called Barretts Syndrome and I'm probably forgetting a few more. I have been curious for a number of years now if any or all of these conditions are a direct cause of my RH. Finding this forum and seeing others who have multiple health issues has raised my curiosity even further. I'm also wondering if my mother has told me everything about my birth and any complcations there might have been in addition to needing the blood transfusions. I'll have to ask her one of these days.
Wow Rex - I have to tell you I am so sad to hear about all you've been thru. I was only the second child of my mom's with RH - my brother was born 15 months earlier and started the whole thing... Which I guess prompted the amino for me which mother said was one of the first ever done and they took me by Caesarian the same day.
My medical problems include having a crappy bowel pun intended - diverticulosis diagnosed at 20 and being told I have the bowel of a 50 year old. I have ended up with multiple episodes of diverticulitis in late 30s and 40s with perforation colostomy reversal etc. I have been diagnosed with soft bones and with osteoporosis at about 40. I have arthritis thru out my body. I've broken my femur both hips my foot my finger all from really nothing. I have hypoglycemia where I can faint if I do too much without eating but I have chronic diarrhea which isn't IBS, which causes me unable to eat. Just last week I had what the drs think was a TIA - (couldn't talk or walk but was lucid) but my heart tests all r fine but my blood pressure can sky rocket then be back to good within 12-24 hrs with no medicine. That night I had super high BP tachycardia and palpitations. They still sent me home in 24 hours.
Anyway - yes very weird. I'd really like to keep comparing notes and thoughts about this. Btw my mom got pregnant after having me and was told the baby had little chance to survive 50/50 best case - he sent her for an illegal abortion. So sad.
Hi Jenny and Rex, I have been watching your discussion with interest on behalf of my 34 year old daughter. As I mentioned earlier, she was my second baby and I am a Rhesus negative mum whose anti D injection was not properly administered and she was not properly attended to (no transfusions etc) even though the medics knew I had developed rhesus antibodies and therefore the second child would be affected.
She has serious gut issues/ abdominal pain and is always bloated with what has been generally diagnosed as IBS. She shows signs of stress and anxiety and has developed OCD issues for which she takes meds. Her ankle often hurts and she is always tired. Unfortunately, unlike her high flying brother, she is not confident or academic and will find it hard to cope when her Dad and I aren't around anymore. Reading your symptoms does not fill me with hope for her!
There seem to be very few of her generation affected and no one seems to accept the cause of all these difficulties.
Did you find it hard to relate to your own age group, I wonder? Do you sometimes, although trying to be kind, say inappropriate things? And have you found it hard to stick at and organise yourself in tasks? I am wondering if these are typical RH disease symptoms?
Thanks and I am praying for you.
Hi Christine,
I'm sorry to hear about your daughter. I don't know if there are typical RH symptoms bc I have not found anyone except thru this forum. I would really like to develop a list to compare and contrast.
What you describe about your daughter reminds me of me... It could be many other things until we recognize most are shared by RH babies. I have a pretty high IQ which I share with my father and his family. I have depression and anxiety which I sadly share with my mom's family. I do say 'the wrong thing' like I have no filter sometimes. I have as you have read multiple weird medical problems. The way I see myself right now is a 51 year old woman who was vibrant and active etc then at about 40 my medical anomalies I'd had actually began effecting my life. Diverticulosis became diverticulitis. Chronic pain and inflammation became fybromyalgia and body wide osteoarthritis with a few broken bones thrown in for osteoporosis. Now my heart palpitations turned into a TIA and I'm back seeing a cardiologist. Like my internal body is at least 25 years older than my physical chronological body. I have old lady diseases.
Jen
Hi Christine,
So sorry to hear that your daughter is suffering. I hope that somehow, someday she'll find some relief. As for the questions you posed in the last paragraph of your post, I have to say that I can answer yes to all of them. Prior to relocating from my hometown of almost 45 years I had maybe 2 or 3 people that could call good friends. After moving, I had very little interest in meeting new people so I basically became a homebody. As time went by I did make new friends and aquaintances but everyone I socialize with now are a good 20-30 years younger than I. I'm also very impulsive when I converse with others which sometimes leads to me saying inapproriate things. And although never a really organized person, it seems that my ability to focus and stay on task is getting worse. There could be likely reasons for all of these other than being affected by RH as I do have A.D.D.
Hi everyone
I'm 47, will be 48 soon, and the first Rho(D) immune globulin was approved a few months after I was born. I am the second child, and I was induced two weeks early and given exchange transfusions the first day. Everything went well for the most part physically, and I only had to stay in the hospital for several extra days. I do however suffer from severe ocd and panic and anxiety. I've just started thinking that perhaps there is a connection btw the rh issue and the ocd etc.. I'm thinking maybe as was suggested by Jenny that our problems are in fact from being ill in utero. Finding your similar experiences is really eye opening. Has anyone found any research on studies done about adult survivors of rh disease? I don't get the impression there are a whole lot of us around as it is well treated today and the prognosis before rhogam wasn't too good. Maybe I'm wrong about that. Just wanted to add my experience. It's nice to meet you all.
Hi Paige,
Welcome to the forum and sorry you're having the problems you are. You're correct though in thinking there isn't a whole lot being written or talked about in regards to the long term affects of RH disease. This is actually the very first forum I've found where people are talking about it. I suspect that there aren't a large number of us out there and those that are may either not have been affected severely or haven't yet put 2 and 2 together in this matter. Hopefully the more that we discuss it the more people will join the discussion.
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.