Adult suvivors of Rhesus Haemolytic Disease

Lyme Disease

Just wondering how many here have Lyme Disease? 

I am like a lot of people on this blog, many problems. At birth i had seven ET. My parent where told i would not live but I guess the big guy had other plans for me; I wish he would let me in on them some day. I have talked to many RH survivors and we all agree on one thing, We have many problems. From the trauma at birth to the physical damage from the toxin build up in the blood. We where only babies that where not developed and this happens, why would anybody think there would not be any damage. I was told i was lucky to live, i disagree, they should have let me die; like God intended. 

I am fairly new to this discussion. So, I want to provide some details. If anyone here survived RH Hemolytic disease & also has dystonia, I am interested in their experience. Here is my story:

 I was born in 1950, the 4th of 5 children born to an RH-mother and an RH+ father. I almost died at birth & had exchange transfusions. My naval collapsed, so I have several scars where the doctors were eventually successful in exchanging my blood. I have had hearing loss since birth. Also, I have had dental enamel issues with my primary teeth as a child. Other than that I was healthy as a child. Very active.

At age 29, in 1980, I was working as a grocery checker. The cash registers were set up like 10-key adding machines in those days so grocery checking was a repetitive movement with a fixed position of the head—now they use scanners, so it is less, or no longer a problem. Anyway, at age 29, I developed spasmodic torticollis (information is also found under the name Cervical dystonia). It is a movement disorder—a form of dystonia, believed to involve the basal ganglia part of the brain. I was told by my doctor that I would have the condition for the rest of my life.

After leaving that job, I was able to eventually gradually recover from the condition over the next 7 years. Then in 2011, I was working at a job where I did a lot of typing (with my head fixed in the same position as the grocery checker job) during the day & also had a project going on at home—nailing hardwood floor in my house, which also required the same fixed position of my head. So, lots & lots of time doing repetitive movements with my head fixed in the same position. The spasmodic torticollis came back in 2011—after a 25 year remission.

It has been another 7 years since then and I am experiencing the same path to recovery that I experienced from 1980-1987. I have come across articles linking RH hemolytic disease to kernicterus. I am not a medical professional. I have read that the blood-brain barrier is not fully developed in a newborn. RH hemolytic disease results in jaundice & very elevated levels of bilirubin in the newborn. The excess Bilirubin, which is a neurotoxin, deposits in body tissues and also crosses the blood-brain barrier & is deposited in the basal ganglia area of the brain.

They need to do exchange transfusions over a longer period of time than would be involved in a regular transfusion because the bilirubin is deposited in tissues & it is only able to be removed in a slower process. Autopsies have been done on RH babies who have died & this area of the brain has been shown to be stained yellow from the bilirubin deposits. I believe kernicterus is related to choreoathetoid cerebral palsy. I found this medscape article: https://emedicine.medscape.com/article/974349-overview. I had to sign in to medscape in order to view it. It says this: The 2 major complications of hemolytic disease of the newborn are bilirubin encephalopathy (kernicterus) and late anemia of infancy. It also says: A high bilirubin production rate is thought to result in rapid transfer of bilirubin to tissue, causing high tissue load, in which case any small further increase has great potential to enter the brain. Because the total serum bilirubin represents not only bilirubin production but also distribution and elimination, it is not an absolute indicator of risk of kernicterus.

This Wikipedia link (https://en.m.wikipedia.org/wiki/Kernicterus) says: Kernicterus is a bilirubin-induced brain dysfunction.

So, like I said, I was the 4th of 5 children. My older sister (#3) had to wear braces on her legs for about 1 year while she was learning to walk. Child #1 & #2 were OK. #5 also had exchange transfusions, but we had moved to LA county recently & she had access to better medical care.

In my case, I believe that my movement disorder/dystonia, is linked to the bilirubin deposits at birth in the basal ganglia part of my brain. I have spent a total of 14 years of my life recovering from spasmodic torticollis/dystonia. Currently, I am still struggling with it since it recurred in 2011, but am well on my way to recovering for the second time. I know one thing for sure—I cannot take on any projects that involve sustained, repetitive movements with my head in that position.

Hi, I was the 2nd child of a Negative mother and was born extremely sick with anemia and given a blood transfusion at 5 days, I have read that the antibodies continue to damage the red blood cells for months after birth. This is an article I can across about in vitro transfusions, but it comments on damage done due to anemia - I have just had another cholesterol test and my Doctor has berated me for not taking Statins due to having 1.9 HDL and 6.3 LDL. My good cholesterol is always low. I will show her this article when next I visit 

 [b]https://www.auckland.ac.nz/en/about/news-events-and-notices/news/news-2016/10/fetal-anaemia-transfusions-study-offers-heart-clues[b].html

I too was plagued with low energy and other problems throughout my life, maybe one day they will put it all together.

Sharon

Hi, I am new to this conversation as well and I was born in 1960. My mother was Rh negative and I am the middle child. I have has muscle issue my adult life that no one could ever figure out and still can't. I have other promblems also fatigue has always been one. Can this be diagnosed on me now to see if this is the answer to many problems I have! I also am very vitamin difficient.please help

Hi new on here.

I’m a rh survivor.

Was severely anaemic when born

Had iron.

Late talker. Early to sit up.

Mum is rh and dad abpos.

I’m b+.

Struggled with school fitting in etc.

Rolling on to now.

45yo On adhd meds. 

Sensory processing disorder.

Obsessive compulsive 

Rejection sensitive dysphoria

Discalculia 

Synesthesia

Emotional hyperarousal.

Eidetic memory.

Severe anxiety periodically.

I’m life I’ve had bouts of satisfaction and success.

Coupled shortly after with internalised failure issues.

Seem to keep on reinventing myself.

Hope to speak on here soon.

Bestwishes

Hi Barry, Not very many men on this group, mostly because men have a tendency to hide their illness/problems from the world. We are taught at a very young age to be tuff,  Kudos for you for speaking up. Many of us have the same problems as you; as a matter of fact I thought I was reading about me, so you are not alone. I tried meds and didn’t like them so I tuff it out and to be honest if meds worked I would be on them. I do take LDN every night. It helps greatly with sleep and my moods. Not sure which child born you are? I was born in 54 and was forth in line. Mom lost #3 and I had at least seven exchange transfusions. There is a lot that happened to us: The toxins then the damage from our immune system which also causes trauma to both the brain and body. Then the trauma from the ET (PTSD) very seldom talked about and to top it off our little brain has not developed. Any development that happens after/if we lived is effected from all that went on from the get go. I still think I would have been better off dyeing at birth than living this life of detached reality. It has been a struggle right from the beginning hasn’t it. I have talked to many, many RH victims and one thing I have found,  we are a caring bunch. We all share in this mystery and we all are looking for answers to the secrets of life and why we are the way we are. I have also found talking helps, we might not have answers but we all have big hearts.

I personally think a lot of trauma we experienced at birth is being cared around in our bodies. I started to do tai chi 27 years ago and after starting I started to have nightmares. You might find this hard to believe but I remember them coming for me and taking me to the room they did the ET. I remembered the room, the sounds, the smells and even the nurse that came to got me. Like we haven’t gone though enough.

Nice to chat

Doug

Hello Bonnie, Yes I think you are right about having a calling BUT that does not change the suffering and heart break that many of us have experienced. From a very young age I was labeled as being different and because of this I was treated less than human. I have always felt like I lived in a bubble, like somebody put a fish bowel over my head with water in it, brain fog, moody, (if I got a dollar for every time I got in a fight I could have retired a long time ago), I should be entered in the Guinness world records for fights lost. I was always weak and sick, cold, flue it just never stopped. When I was young I remember sitting on a bridge over the hi-way. I still don’t know why I did not jump. But there is something inside me that is a fighter. That is how I survived, i fought when I was born and that is the way I have lived this long, I fought, fought and fought some more.

Tai Chi

I started tai chi in 1991 after many years of ill health. In a very short period of time I noticed a general increase in my health and I knew this was a tool I could use to help me fight. So I started my own little war on ill health. I cannot say enough on what tai chi has done for me. Is it the end all to my problems, no but at least I can fight. When I do Tai Chi all my problems go away, I am strong, the fog lifts and my body is no longer a burden but something that I can enjoy and be at peace with. Sometimes I think I was given a gift because  the joy I get out of life sometimes. I have concurred an illness that should have killed me a long time ago. People have looked at me with such judgment but I can honestly say that not too many could have risen above the odds and lived as long as I have. Yes I have crawled into a hole and hide from the world, do you blame me?

 I guess all of us have learnt our own way to deal with this illness and it is an illness that we are born into. Day one is only the beginning of a very long arduous journey.

Thanks Bonnie

Doug