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Adult suvivors of Rhesus Haemolytic Disease

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.

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  • boobooki boobooki

    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 smile

    he suffered terribly as a child, at first they thought he may be deaf but

  • boobooki boobooki

    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.

    • christine64233 christine64233 boobooki

      How are you getting on with your son? I hope that you are still looking at this forum as I think things are moving in the right direction. I am sure that there are more RH affected younger people out there who like your son and my daughter were 'overlooked' or not dealt with in utero or soon after birth.

      Let me know your son's other symptoms if you wish, and we can see if there is an overall pattern, as seems to be emerging. I wish you well. 😀

       

    • adag adag boobooki

      I was born in the early seventies with RH disease.  I also had an alternating eye turn until it was corrected by surgery in my 30s.  I've struggled with anxiety and depression for most of my life.  I'm just starting to research the impact of RH disease on adults.

    • adag adag

      I had a blood exchange procedure when I was a boy.  My mother used to say:  "they had to change your blood out one teaspoon at a time."  I was in the incubator for some time before I could go home.  They said:  "You were a very sick little boy."   Seems like we really had to fight to come into this world.

    • katherine88455 katherine88455 adag

      I'm glad I found this forum. I was an RH baby as well as my brothers and sisters. We were all given blood transfusions at birth. We all are "different". One of my brothers is deaf and severely autistic(they considered him retarded back in the day, but now we think he is autistic). My siblings and I have all struggled with anxiety and depression as well. I came to the internet this morning to see what the long term effects of being an RH baby(of the 50's) were. I was wondering if my irritability and short term memory problems and inability to concentrate were due to my Mother's blood trying to kill me! My dad is practically a genius with super memory at 87 and my mom was a chemist with a 6 year degree from Berkeley. None of us kids ever did that great in school or in our life work. My sister has serious RA. My other sister is manic with a little depressive in there. My little brother had learning disabilities also. He died at 53. My big brother died at 53 too. This is all very interesting to me. I feel relieved that my inability to concentrate and remember things might be due to months of attacks on my blood in utero.

       

    • tra10297 tra10297 adag

      Hi i too have the same illnesses as you. My mum who is RN didnt get any injections while she was pregnant with me and i also have my dads blood group O positive. Is there tests you can do privatly to investagate this . Reading what others say here i seem to have a lot of the same health issues that has gotten worse from teenage years. I too had a notion a few years ago to try to investagate this when my daughter was having her firstborn and her blood is RN. She had to get a few Anti-D injections and my mum is insisting my illnesses are because she didnt get this injection. Also i live in Northern Ireland and back in late 60s-70s in Ireland there was something wrong about this whole RN and this injection. Its good to know a few others are also quering this. Thanks.

      I did copy and paste my text of the above to a few people on this site. I would be very intrested in knowing did you come to any conclusion with your investagation.

    • alexandra 70180 alexandra 70180 katherine88455

      Myself as well as my two sisters received transfusions at birth. My sisters both received blood from family members. I received mine from a donor. I inturn am the only one of the three with Multiple sclerosis. I was dx'd at age 34, I am now 47. Thankfully am still ambulatory. My eldest sister was 55 when she passed but suffered most of her life with bipolar. Glad I found this site. I strongly believe this may be the reason I am the only with this disease in my family.

  • christine64233 christine64233 Guest

    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

    • selina26483 selina26483 christine64233

      Hi I am a rh negative mum to a 18 year old daughter who did get light treatment with jaundice, when born .

      Her noticeable problems started at high school age 13 , just as you described , she never attended high school 90 persent of the time. A pediatrision thought she could have Gilbert's syndrome , never confirmed but did say a genetic test could be done to determine it , anxiety problems , and I have been wondering if any autistic traits could be what's up ,

      She was diagnosed at 15 with a hearing loss . ( had all life)

      During this time she had high billirubin readings but ignored and more recently anemia , I am still racking my brains why this has all happened why at puberty would this all happen , I will continue to look for reasons as my daughters future has been robbed and no one takes it seriously and finding it more difficult to get help for her as she is 18 now . I just thought everything you mentioned were too similar and hope you and your family are doing well but I think this is a battle worth fighting about for the sake of our suffering kids .

      Regards Selina

    • shay72273 shay72273 christine64233

      Wow I am an undiagnosed 35 year old.  I have spenth the last 7 years trying to figure out what was wrong with me.  The doctors thought I could have an auto immune disorder but nothing panned out.  But I have had all of the described traits with exception of difficulty with school, possibly because my OCD was being a perfrectionist lol.  But U have issues with my joints, IBS and have suffered from panic attacks through out life.  I also suffer from extreme fatigue.  All of thes issues got worse with age.  I have learned to manage and have maintained a job.

    • tra10297 tra10297 shay72273

      Hi i too have the same illnesses as you. My mum who is RN didnt get any injections while she was pregnant with me and i also have my dads blood group O positive. Is there tests you can do privatly to investagate this . Reading what others say here i seem to have a lot of the same health issues that has gotten worse from teenage years. I too had a notion a few years ago to try to investagate this when my daughter was having her firstborn and her blood is RN. She had to get a few Anti-D injections and my mum is insisting my illnesses are because she didnt get this injection. Also i live in Northern Ireland and back in late 60s-70s in Ireland there was something wrong about this whole RN and this injection. Its good to know a few others are also quering this. Thanks.

    • tra10297 tra10297 christine64233

      Hi i too have the same illnesses as you. My mum who is RN didnt get any injections while she was pregnant with me and i also have my dads blood group O positive. Is there tests you can do privatly to investagate this . Reading what others say here i seem to have a lot of the same health issues that has gotten worse from teenage years. I too had a notion a few years ago to try to investagate this when my daughter was having her firstborn and her blood is RN. She had to get a few Anti-D injections and my mum is insisting my illnesses are because she didnt get this injection. Also i live in Northern Ireland and back in late 60s-70s in Ireland there was something wrong about this whole RN and this injection. Its good to know a few others are also quering this. Thanks.

    • Samisha Samisha christine64233

      I'm a 40 yr old rh negative mother of 2. This is the first time I've become aware that this disease existed! I just recently learned the rare characteristics and similarities of people that are rh-negative, and have been spending hours researching different articles and web sites (I guess that's what they are.) I'm not very computer savy but I've dug so much to know that we are definitely different... however this is the first place I came across any information about it actually possibly responsible for physical health problems! This is my first time being in a forum?/ blog? like this, i don't know if you actively participate in this still but am hopeful. I have many of these health complications and my 21 yr old daughter does too. Its rare for our problems to get diagnosed and we suffer. Hope to hear from you soon.

    • geraldine60291 geraldine60291 Samisha

      Dear Samisha

      Yes this site is still active and, I believe, a great comfort to many as a light has been shone on many of  their health problems.  It is just a pity that hardly any research has been done.  I was not aware that those who had had transfusions still had problems as I managed to survive as a rh baby without them but, apparently, I'm something of a rarity.I hope it is of some help to you too.

    • brenda03504 brenda03504 geraldine60291

      Hi Geraldine!  I also survived without transfusions, but was a fairly sickly child until puberty.  I was anemic, suffered from seizures (was given phenobarbital until I was 7), was very thin, had a very poor immune system, very thin tooth enamel and some minor auto immune symptoms.  Later on I had gestational diabetes.  Some issues with depression and hormonal imbalances in my middle age.

      I consider myself fairly lucky to be a survivor!  I am also very thankful for this forum!

    • geraldine60291 geraldine60291 brenda03504

      Hello Brenda

      I have only just picked up your notice.  At Last! Another survivor who did not have blood transfusions.  I began to think I was the only one.  Life can be tough at times but I believe that makes you appreciate the good times even more.  I am going to the doctor for a medication review in August and am going to tell them that this should all be on my medical records.  I hope they do not dismiss it as unimportant.  It is VERY important to us survivors to get some insight into our problems.

      Best wishes

      Geraldine

    • geraldine60291 geraldine60291 kim84686

      Hello Kim

      I am missing all the correspondence with adult survivors and hope I get a reply to this.  I have written to Dr James Le Fanu  asking for his thoughts about Rhesus Haemolytic disease.  He writes in the Daily Telegraph every Monday and I'm hoping I will get feedback from him.

      Best Wishes from Geraldine

    • vicki84913 vicki84913 kim84686

      Hi Kim, I have been following this site for awhile. I am the 4th of 5 kids. Had exchange transfusions in 1950. Hearing loss on one side since birth, problems with enamel on primary teeth, at age 29 I developed dystonia. I am curious what your research has turned up. I understand that RH is linked to dyskinetic cerebral palsy. The bilirubin crosses the blood-brain barrier & deposits in the basal ganglia portion of the brain, which is the movement center of the brain. They have done autopsies on the babies that died & this area of the brain was stained yellow. The cells that are stained yellow die. I read that RH is linked to dyskinetic cerebral palsy. My sister/#3 wore braces on her legs for 1 year when she was learning to walk—she was born in 1946 & did not have transfusions. But she learned to walk & has not had problems since. I believe that my dystonia, which I acquired at age 29 is linked to basal ganglia problems from birth. So, movement disorders seem linked to RH. Also hearing loss and primary teeth enamel problems. Anyway, I’m really OK. I was told by the neurologist that I would have dystonia for the rest of my life. But, I have had 2 bouts of it (1980-1987 & 2011-2018). For me, I need to be careful of doing repetitive movement with my head in a fixed position, which brought on both bouts of dystonia.  I am getting over it for the 2nd time. I will avoid that now for the rest of my life.  I’m glad this forum is here. Thankyou for sharing.

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