Adult suvivors of Rhesus Haemolytic Disease

boobooki · 2023-07-31T11:54+00:00

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

boobooki · 2022-05-27T21:32+00:00

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 Guest · 2023-06-23T19:57+00:00

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

Adult suvivors of Rhesus Haemolytic Disease

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