Adult suvivors of Rhesus Haemolytic Disease

hi 134667

 i would have to agree with you on all your points , i was born 1970 with rhesus diease had 2 blood tranfusions and a blood exchange from which i developed necrotising enterocolitis , but after all my baby troubles i have been perfectly fine ever since . i just think that people want something to attribute their adult illness too . ive read up on baby blood transfusions ect and cant find any real link to adult illness . i was beginning to think it was just me that was healthy  ha ha

Just to clarify, were you born an RH baby? As a person who was, I don't believe that a fetus can survive 9 months of having it's developing body attacked by antibodies 24/7 and not have it cause any issues later in life. Bear in mind that many RH babies were either stillborn or died shortly after birth. No one on this site can say with 100% certainty that their health issues are due to being born RH. Doesn't hurt anything to compare notes. Just saying...

yes as it says in my reply above i WAS an RHbaby and have copies of my medical records to prove as such and that i had necrotising enterocolitis which is also a baby killer or leaves you with short bowel sydrome but i was very very lucky and have come through both unscathed and my bowel intact

Yes, I was born an RH baby (one of several in my family, and one of two that survived it), hence the references to jaundice, multiple blood exchanges and transfusions, and rhogam  (which was not available to my mother prior to my birth). As I said, I find the entire discussion fascinating, but I don't believe that an RH baby is automatically doomed to a lifetime of debilitating ailments. I can say this with at least some authority because I am a healthy, adult, 50-something former RH baby. If I develop issues as I age, I won't make assumptions that they are a delayed reaction to RH aftereffects. It is unfortunate that some individuals have suffered a lifetime of illnesses and other problems that they are seeking relief for and answers to, but I find it somewhat irritating that this is reaching a point of being viewed as a blanket disability. I wasn't brought up to view my situation as special, or unique, or a challenge to overcome. I was just another kid in the family - a lucky one. And I am perfectly fine today. Still lucky, I guess.

I guess there are two of us healthy former RH babies.

Dear healthy adult survivors of rh

Go down on your knees and thank God for your good health.  Of course we cannot attribute the problems to being born rh but as the previous writer said you are extremely lucky if being in the womb for nine months and, to all intents and purposes, poisoned, it is not surprising that some have been left with problems.  Why is it that people with the rh negative blood group have to carry cards, as a friend of mine has to, to make sure they are not given rh positive blood should they need a transfusion?  The wrong blood group could kill.

God bless you all healthy or otherwise!

Geraldine 

the fact that your friend has to carry a card incase of blood transfusion is a totally seperate thing to rh dieases .but i think its time people took a step back and asked themselves would i have got my health problems without rh problems and the answer would proberbly be yes , reading the comments on here ive not seen any science facts linking rhd with any adult health problems and if people want to blame the transfusions themselves their have been thousands done over the years and not just for rhd ,so if their was long term after effects then im quiet sure they would have found them by now in somebody . As for getting on my knees and thanking god i dont think so ,i will thank the surgeon and the NHS but thats it . i was the 4th born so i got it bad style . people need to stop clutching at straws for answers they may never find

Dear Paul

I was born before blood transfusions for this disease started.  A brother born before me (my mother's fifth child) died at 7 months because he was born severely jaundiced and weak then developed menanjitus and would not feed.  A brother born after me died under the blood transfusion at just five days old.  I was always considered something of a miracle child because I survived at all.being also born severely jaundiced and very weak.  I am convinced there is 'something' in the fact that being rejected in the womb can have some sort of a lasting effect. I'm glad Paul at least thanks someone for his excellent health. I'm sorry if I offended mentioning God. It certainly wasn't intended as such. I don't think much research has been done due to the fact that this is not a problem now as expectant mothers are injected and the child/baby will have a blood transfusion which, and I know I am repeating myself, I never had.

 Best wishes to all those brilliant survivors out there.

Geraldine . 

Hi Paul.  I think many of us come here to share our stories and hope for compassion.  We all have our own unique experiences, our own understanding and manifestations of the Rh negative incompatibility experience.  I find interesting how many of us share the same symptoms.  For my understanding it's more complicated than just the transfusion it's that the mothers antibodies attack the fetus in utero at a time when the developing systems are so vulnerable.  In addition many of us are born premature and have invasive procedures immediately upon birth and there is clear clinical evidence that premature babies do have a wide range of challenges, including depression and anxiety which I find common in this discussion.   I agree there are studies about transfusions but I wouldn't equate those as comprehensive with the whole experience of this disease.    Most Rh- babies died and if they did survive that was the success and no follow up was indicated.  I'm not aware of any specific studies of the long term effects of the antibodies attacking the fetus.  If you do know of some I think that would be of great interest to this group.  

Excellent post Susan. One only needs to look at what are/were the short-term effects of being born with severe RH incompatibility. It was long ago established as fact that Rh disease can cause severe anemia, jaundice, brain damage, and heart failure in a newborn. In extreme cases, it can cause the death of the fetus because too many RBCs have been destroyed. I think it would be foolhardy to assume that there wouldn't be ANY long-term impact given the horrible ones that are short term. After my mom gave birth to my two sisters, her doctor sternly warned her that having a third child could be very risky to both her and me. She decided not to take her doctor's advice and got pregnant with me anyway.Two blood transfusions and a stint under a Bilirubin lamp, I was sent home with no additional followup. Too little was known about RH babies to adequately predict if there would be and what would be the long-term effects.

Hello Paul, i was the 5th born and had it the worst. Due to my mother being RH, and being her 5th child, it was so severe they had to induce and delivery me 2 months early. I'm here looking for info, and im sure most others are too. I dont feel we are clutching at straws, as you put it, or trying to blame something for our problems. I know i have a lot of issues that no one else in my family has, so like i said, i am here to get a better understanding. I don't know if you intended to come off like a pompous ass, but try a little compassion for others before you come in being rude.

Well said Susan. I was one of those forced early deliveries, two months to be exact. All my mother will tell me was that they did an emergency c section because her system was attacking me in her womb. They told her to fully expect me to be still born. When i wasnt, they chalked it up to a success and sent me home without follow up. I have a ton of residual problems ranging from depression to calcium and vitamin d deficiencies. Like i said, i have no information about my early medical problems, and have also noticed i share a lot of problems that others in this group have mentioned. I think its pretty rude of people like Paul to come in and discredit us, especially when there has not been any real studies of the long term effects of RH on peolple born into this.

here is something you all might be intrested in

[b]http://rhnegativeregistry.com/what-is-microchimerism-rh-negative[b].html

I don't know how old you are but there should be no children born with rhd after 1968. All pregnant rh negative women should get their injections. I have three sister and all of them were injected and had beautiful healthy babies. I on the other hand had my baby under the care of nhs and didn't get the injection and had a baby prematurely with lots of health problems. I was never told the reason for premature birth, in fact doctors covered it all up. I only found out a year ago about my negative blood and suddenly everything made sense. All that was needed was simple blood test. Lots of suffering for stupid mistake. 

My son needed general anaesthetic and he nearly died because of it. He lost three stone in weight and month to recover. We we told he has a reaction to the anaesthetic and he should be given different one. He needed a second operation I asked if he could have a different anaesthetic because of reaction previously, no they still gave him the same one. He came out of operating theatre so freezing cold they had to wrap him up in foil to get his body tempature up. I connect all this now him being a rhd adult. Where is duty of care we should receive from medical professionals.

Can you imagine if I became a blood donor and donated my sensitized blood could it have caused some unlucky women to go on to have rhd babies. I thank God to give me strength to carry on, not nhs.

hi mari

 i was born in 1970 at burnley general the last of 4 brothers who all got rhd to various degrees , had blood transfusions and a blood exchange , transferd to manchester childrens hosp due to complications of the blood exchange causing necrotizing enterocolitis ( lack of blood supply to the bowel) mainly seen now in pre-term babies both of which according to my medical records should of killed me  . i know from reasearch some mothers who are rh neg are being missed and not getting or getting the injection late and the injection wasnt fully used in britain until about 1972ish

Thank you Paul.  That is interesting.  I've never considered the impact on the mother in this Rh incompatibility situation.  It talks about the mother having autoimmune difficulties and I think there are a lot of people in this forum that suffer with autoimmune problems as well.  I googled microchimerism and found this link too:

https://aeon.co/essays/microchimerism-how-pregnancy-changes-the-mothers-very-dna  

I think it's very good of you to share this with the group.  It looks like the exchange of blood during pregnancy has long term effects on both mother and child.

Dear Paul and Susan

It is interesting to see that there can still be problems today with rh born babies despite mother's being injected and blood transfusions taking place.  I regard myself as extremely fortunate for, despite being born before all these procedures (1943) I somehow managed to survive.  The family doctor told my mother to prepare for my death.  Yes I have had many health problems but cannot be sure they are all due to this condition but some of them seem very similar to others who have commented on this

Best wishes to all.

I was born in 1981. My mother had already had two children by the time the injections were available and back then you couldn't get them if you already had given birth. Some of you in here are a little too opinionated for me. Between you and Paul up there!

glad to hear im an over opinionated pomposs ass lol but there is no use of a group just sharing a list of medical coditions that you all seam to have in common if you dont share the reasearch or facts to back it up , just sharing the list of conditions nobody learns anything that might give them the answers they want  . their was reasearch done in the 90s on approx 500 kids who were from rhd mothers aged 8-17yrs old . the only way you are going to get any type of answer is to proberbly find one of the reasearch hospitals and ask them if any reasearch has been done on adult rhd but not published publicly and see if they will share their findings . i must admit ive search for adult reasearch and havent found any yet 

I'd like to see some research, because quite frankly I've known people with many of the conditions I've seen listed in detail here that have no rh history. And there are people such as myself, with an rh history, that are perfectly healthy both mentally and physically. I will stop short of saying there is no correlation (because obviously, no one knows for sure) but I am certainly not comfortable saying that particular health conditions are a result of this simply because several people have the same thing. We could find 30 more non-rh people with similar issues. And I will reiterate my earlier statement, since I was questioned about it previously, I am indeed a 50-something rh baby born prior to the availabilty of rhogam. I survived multiple blood changes and transfusions and jaundice after birthand can say that yes - some of us are perfectly okay.

If you read the info written about this condition by medical community you will see that it's states different conditions may happen after birth such as cognitive issues if it effects the brain I'm sure it effects other areasI have ADHD depression anxiety that I did not realized I had until I was diagnosed with depression I was anemic as a child I was very pale no one bothered to check this stuff out it was in the early 60s my younger brother was born with severe jaundice and enlarged liver all kinds of issues he grew up ok but also suffers from ADHD and many medical issues that's would not happen to. His age group. They started in his 40s diabetic. Thyroid colon cancer. They just found he was very anemic probably all his life. But when a group of people have same issues there has to be something to it

Replied to your earlier post and Agree and share your views,no follow up,no discussion you were considered all ok.My son has And and my daughter, And and other mental health issues, I too suffer depression,not good at sports,found school hard,very sensitive, considered a little different in my family as had trouble reading and understanding things....it helps to share!