Adult suvivors of Rhesus Haemolytic Disease

Hi my name is Linda i am 51, I have 7 sisters and 2 brothers our mum was RH negative we all had full blood transfusions when we were born I am third youngest, I have been having problems since I was young, heavy periods that made me anemic ended up with a hysterectomy had insomnia for years till I was diagnosed with type 2 diabetic, fibromyalgia copd kidney problems constant joint pain loads of other things too many to mention broke my leg in three places standing in a kitchen not doing anything the doctors have never found out what is wrong I have constant high white blood cells, I have always thought this was connected to transfusion as all my family suffer from same symptoms and that is the common factor, I have always asked doctors and they have never said anything I never even knew there was a RH disease I have tried researching it and this is the first time I have found anything related to it with all similar symptoms so glad to have found this forum, my daughter has the negative blood and has lost 2babies through it and it was obviously passed on in my genes and my first daughter was born very prem and lucky to survive, my three children were prem why haven't doctors warned us or let us know that it passses on as well, I feel we have all been let down by the system.

I am amazed by this forum and feel that I must add my own experience as it is so similar to many other people here. I had a blood transfusion 55 years ago from birth and spent 2 weeks,I believe, in hospital. I was given high doses of iron which resulted in pitted and discoloured adult teeth. I have suffered anxiety and depression from a young age, diagnosed with hypersensitivity after a neurological test at around 9yrs old. I have had frequent migraines my whole life and a form of IBS triggered by anxiety developed from my twenties and have become more frequent as I age. I have had tachycardia since adulthood which became more severe untilI I was eventually diagnosed with junctional tachycardia and it was treated with an ablation technique in hospital. I have always had hip pain and can only manage short distance walks. I found pregnancy very difficult due to hip and leg pain. My first born was born one month early and developed ASD.

The main difficulty I have in life is that I feel I just get through by the skin of my teeth. It often feels like a struggle and I always worry about the next hurdle. In a way, this forum helps me to feel that I am not alone.

Thank you, l will look in again.

hi all

i was born in  Burnley lancashire U.K. in 1970 the youngest of 4 boys , 2 of my brothers had blood transfusions but i had the most servere form of RHD and needed both transfusions and blood exchanges plus light therapy for the over production of billirubin . after being in hospital for a short period my weight dropped from 7lb 4oz down to 2lb 2lb and i was rushed to pendlebury childrens hospital by ambulance( with police escort ) as told by my dad and auntie . for emergancy surgery for a gangerous bowel then given 6 month to live but im still here i was allowed home after 4 month of which during that time nobody was allowed to pick me up ect due to my size  . the only problems ive had since is my teeth due to the lack of enamel on them because of all the drugs they pumped in to me . i still have the scars where needles were put in to feed me and to take blood plus a nice 8 inch scar on my stomach from the operation . when i came out of hospital i was put on preprac baby formula ( if anyone heard of it )with a strickt feeding routine of every 3 hours including during the night and told to treat me like a normal baby and apart from the normal childhood illnesses ive not had any problems since.

hi i forgot to ask in my post is there anyone else on here from the UK ??

Hello, I am pleased to have found this thread as I have information to share and a question. My sister born March 1949 in Auckland, New Zealand is the first rh baby in New Zealand to live. Some time later she was informed she was the first in Australasia. Today she is healthy and still lives in NZ. My question is does anyone know when the first rh baby to live was born and if so what country.

Hello, My name is Doug and i was birn in 54 and war the fourth child. I have a number of scare lettle from the Exchange transfusions. I have talked to a number of RH survivirs and we all agree on one thing and that is we all have some damage, Brain Damage. I have the same prpblems you have. What year where you born?

I know this was posted quite some time ago but I'm wanting to know if anyone has found any answers. When I was pregnant 10 years ago I started bleeding and went in and was just told I needed a rho gram shot because I was rh negative and my baby was rh positive. So I got the shot and went on my way. Nothing that I can remember was ever mentioned again. I was 19 no clue. Then during regnancy I developed gestational diabetes and risk of toxemia was induced 2 weeks early. When in labor I lost feeling from my neck down my oxygen dropped and my baby heartbeat was getting weak so I was rushed fr a emergency c section. The Dr said the cord was wrapped around his neck. After giving birth at my post o.p appt I told my Dr I felt different like a hormone shift or something. She says I just needed to lose weight but when I did I still felt different. I just let it go. I always struggled with depression and anxiety but never diagnosed. Now 10 yrs later I have an autoimmune disease still not satisfied with diagnosis have been going through major health problems for 2 years and my baby was diagnosed with autism and anxiety and sensory processing disorder and I believe has some depression. And recently going now for health problems and wonky blood work he is going to be seen by a rheumatologist for possible autoimmune disease. He is 10 and showing signs of puberty. I'm so worried and feel alone because of being constantly pushed on by Drs. I feel there is connection from the beginning because I was never informed of what any of it meant.

Hello! So happy to have found this forum!

I to am a survivor of infant jaundice was born weeks early and was in an

incubator for three days. Not sure of any blood transfusions, never thought to ask.

In my life I have suffered from most of the same symptoms everyone on this thread has listed

Early twenties it was migraines, depression, anxiety, and I developed tendinitis in both wrists at 20!

I have always suffered with school and found it hard to make/ keep friends, knee + ankle pains,

slight scoliosis, anemia, low energy, and being generally frail!

Also concentration issues and slight OCD.

Never really thought about my birth problems may be the cause until recently.

I am now 30, luckily I have been able to find a secretary part-time (after years of working two jobs)

That allows me to pay the bills and yet still take it easy. Since I can no longer do too much

Without becoming fatigued. Which sucks because I like being active.

Thanks for listening & thanks for this forum!

I had my son in 2006. I had anti c and anti e during pregnancy. He was born 6 weeks early to prevent a blood transfusion in utero. He was showing fetal anemia in the brain and the doctor wasn't promising a live birth. My son was born with severe jaundice, he wasn't yellow, he was red. I didn't have a lot of information on this so I went with what I was told by the doctor. He never crawled, he bear crawled at 10 months. He walked at a year and a half. Very delayed in development. With this said he is now 10. He has ADHD, anxiety, migraines, difficult temperament, and so on. He is 10 but emotional maturity is that of someone who is 7 or 8 years old. I believe the anemia and jaundice played a big role in his brain and development issues. I was wondering if anyone else is like this or has a child like this. Thanks in advance.

Female born "1953" transfused. Disabled age 52 w depression, anxiety. High IQ, low energy and se eve issues with executive functions. As a child dreaded playground time - I was slower, could not jump rope or do gymnastics or throw a ball. Survived by being funny and a good dancer!

I attributed my symptoms to a head bang but looking back I was a very clingy emotional child.

My teeth were weak, I have severe osteo and have had so many random surgeries -

Hand tumor

Parathyroid tumor

Osteoma tumor inside skull

Eating disorder

Alcoholism - recovery

Considered very bright and clever

Extreme fear of putting my head under water

And my mother and I were often in conflict

So, basically i too suffer from most of these problems/ailments. At 36, i need carpal tunnel surgery on both wrists, my feet are literally falling apart, i dislocate one or both knees at least once or twice a week, i suffer from speratic depression, and now they have found cervical degeneration with cord flattening in my neck. I have repeatedly asked my mom what test/treatments were done after i was born. I was born 6 weeks early since we had different blood types and they fully expected me to be stillborn. She won't tell me anything more then, "you miraculously were born alive and they ran a simple blood test on me and that is all. I have memory problems as well, yet specifically remember being told of repeated hospitalizations as an infant, even though she flat out denies any of that now. I dont know, maybe i just need to vent, but really wish i could get answers. Thanks for this forum, at least i can try to get some if this off of my chest.