Really not sure who to believe

[Harveysmum369]

Harvey was born with polycythemia and had a partical exchange transfusion at 3 days old...when he went for his check up at 4 months,they discharged him from SCBU and said that he was fine,I asked if any other children I had would have it and the consultant said that yes they would as its something in my genetics so I will pass it onto every child I have.
The consultant who saw Harvey at 18 months in Norfolk,said it was a one off and it shouldn't affect any more of my children.
Does anyone know anything about it?Xx

 

[quirk]

Sorry you've been given some mixed information, the same happened to me when I was told about my genetics. I'm sorry that I don't know about polycythemia as well. Have you and your partner had your genetics tested? It most likely depends on whether the gene causing polycythemia is a dominant or recessive gene. If the gene causing the polycythemia is a dominant gene, then either you or your partner would have had to have had polycythemia also, unless it was a one off gene mutation (which would mean all your future children should be fine). Otherwise, if it was caused by 2 recessive genes, then both you and your partner are probably carriers of the recessive gene, meaning that only 25% of your future children would have polycythemia. I'm sorry I don't know if it's caused by a dominant or recessive genes. I would try and arrange to speak to a genetics councillor to get a straight forward answer though, as they have been very helpful in my situation.

I have just found this information though ... https://ghr.nlm.nih.gov/condition/polycythemia-vera. It explains that most of the time it is caused by a dominant gene - meaning that all your future children should be fine. But, in rare cases, it can run in families, - not in the sense that all your children would have the condition, but would rather have an increased risk.

 

[Harveysmum369]

Thank you for that!Would I have to speak to my GP,or the hospital where he was born do you think?xx

 

[quirk]

I would ask my GP to help me arrange an appointment with a genetics councellor, failing that, I would search the internet for hospitals that deal with genetic issues near your area and call them. You would need to search for the Departmnet of Clinical Genetics. I have contact details for the Leeds hospital, but that's it unfortunately. x

 

[Harveysmum369]

I've rung the GP,they are calling me back,will prob get fobbed off xx

 

[sweetlullaby]

Hopefully you won't get fobbed off hun and get some answers soon as to which is which

 

[Harveysmum369]

Hope so,she can't say yes or no though as if she knew that much surely she would be a consultant!lol.xx

 

[Harveysmum369]

Just got the nice doctor on the phone,he went back in Harveys notes and said the type of Polycythemia Harvey had ISN'T hereditary! But he did say when I have another baby to mention what Harvey had at my booking in appointment and then can test baby for it at birth.xxx

 

[quirk]

That is brilliant news!