hi hun ,ive accepted you on facebook ,when i was pregnant with lennox they never offered me any tests ,i dont know if that could be because i made it clear regardless of what was wrong i was keeping him,once i knew at my 20 week scan he was a boy i panicked ,i sort of knew ,i thought ive dabbled with fire 3 times and luckily got away with none of my children having either blood disorder ,but i knew what it meant if i was carrying a male ,the back of my mind i hope for another girl has i know they can only get von wille brands like myself of be a carrier of haemophilia ,i know thats bad enough but its not has bad has a male haing haemophilia ,i can remember being tested when i was 11 ,i just developed a massive bleed on my tummy they rushed me in and said it was either leukemia or a serious clotting disorder ,they even asked me if my parents had ever done anything to me ,they p***ed  my ear and timed how long it took to stop then i had lots of blood tests ,they then found the von wille brands i have the rare type so i never thought kids would realy be a option,i had my first when i was 19 so didnt know the impications or how much i was putting my life at risk ,i ended up with a post partum heamorrage ,my only other son and first born is nearly 16 now ,i think lots of people judge and think well why did you have children ,i know when i was at school people used to work me and say have i got aids because of the dirty blood transfusions it hurt but i was not bothered ,i think having my blood disorder has made me a stronger understanding person ,im not scared of anyone wiht hiv ,or aids ,i believe we all should learn about things rather than judge ,i would never wrap lennox up in cotton wool ,theres no point has what will be will be ,when lennox stopped breathing it was awful ,i was put on valium and have ben on it since has im so anxious ,he is on omeprazole and gaviscon but refuses to drink at all ,he basically has powdered food very runny made with comfort milk ,but you darent go near him with a bottle or syringe ,his been dripped due to dehydration but we starting to get there now ,his 7 months so its getting easier ,x x xx x

hello again loraine, no need to thank me for replying to you. im always on the look out for other people in the same boat as me to get in contact with. its nice to know your not alone and to have the support and friendship of others!! i really hope that the appointment goes as well as can be, you'll have to keep me updated, if you dont mind that is?  believe me your not alone about feeling guilty. when i found out i was pregnant, first thing that came to mind was the haemophilia. luckily enough i was offered an aminocentius with josh to determine whether he was a haemophiliac or not. before this i'd had a blood test so we could find out what sex the baby would be. when it came back as boy i totally cacked myself and then when the res***s from the other came back as positive i just felt so bad it was untrue. my partner and his family kept telling me off for feeling guilty. told me that they'd all still love him no differently to any other little boy etc and that they were glad to just be having their first grand child. my family also felt the same. but it dont stop how you feel. i still feel bad now and sometimes cry when looking at josh and talking with him. we survive though hunny and thats what counts!! we like you have had a few problems with josh since he was born but thank god he's not stopped breathing on us. i can not imagine what that must of been like for you. joshua also has a reflux problem though and is on infant gaviscon for it and has been dehydrated too. i love my lil man soooo soooo much and cound not imagine life without him now, he means the world to me and your lennox sounds a true miracle! i shall add you on facebook when i next log in on there sweet. shall speak with you soon. till then take care of you and little lennox

rach xx

hi rachel first of all thank you so much for taking time to relpy to my post ,im so sorry about your son,life is hard ,we have finally had our appointment sent for the haematologist ,lennox goes 15th oct so not long to wait ,i feel very guilty and i blame myself,my grandad died at 32 from it ,with my von wille brands i cope realy well i have a severe form of it and was told never to have children but i have 4 ,i have had some counselling to prepare myself for whichever outcome it is ,they have also apologised for not giving me a cvs when i was pregnant ,would not have made any difference has lennox was a miracle has i said my partner is99.9%infertile and fighting hodgkins disease for the second time ,so no matter what i was keeping him.has i said my daughter who is nearly 14 is a carrier but i dont think she understand fully thta her children may get von wille brands or haemophilia ,ive been checking on here all the time for someone to talk too and i had nearly given up ,im on face book ,LORAINE STOCKS ,if you would add me .im taking valium at the moment has lennox stopped breathing at 4 weeks old and had severe reflux has well has a abdominal hernia ,its been a roller coaster ride,i had pushed the blood disorder to the back of my mind and thought he would get tested like the others when he was 1 ,but then he had the bleeds ,so i know and my gp and peadatrician have told me to prepare for the haemophilia more than  the von wille brands ,we have a big hospital 40 mins from us in newcastle called the r.v.i its named after queen victoria has she had von wille brands ,bit of history for you lol.so i know we will have a lot of support but it still doesnt take the guilt away ,people at the  baby clinic i go to try to understand but how can they ,i know you do ,so it would be great if you would accept my friendship ,thank you ,god bless loraine and gang x x x

Hi  Lollyanna,

my names Rachel and i have a 6mth old son who has severe Haemophilia A (less than 1% factor and so has it quite bad. luckily so far he's not had any bleeds *Thank god!!*

i've got to admit that i've not read through all the posts to do with haemophilia but what i did read quickly i've just gotta say that your not alone. believe me i felt that way to begin with and still do to a certain point.

i've always known about the haemophilia being in my family from when i was a child. my dad and his brother were both haemophiliacs and both unfortunatly passed away some years ago now due to dirty blood from which they contracted HIV. i obvouisly am a carrier of it. i have one 9 year old daughter who i do not know as to whether she's a carrier or not as the hospital will not test her until she's at least 13 and understands what sex is, how a baby is made etc etc...and then i have my little man who as i said before is a haemophiliac.

i live in Exeter, which isn't a very big town and so we do not have a clinic or any support nusres etc and because of this i feel quite alone. i have no-one that i can meet face to face with and conpare notes with or be adviced from. but one place i ahve found alot of help and helpfull, friendly people is a site called FACEBOOK. dont know if you've heard of it? but on there they have a group pacifically for those with haemophilia or for parents of kids with it.

at the moment i am just looking for other parents to talk with so that i dont feel so alone. if you would like to talk with me then hopefully you will respond to this.

till then take care....rachel xx

thank you so much ,it would help me a great deal if you would get the lady to talk to me on here ,and yes i wouldnt change having him ,i knew every child i had was at risk and more so being a male ,but i had no cvs or bloods done has it would not matter  what he had wrong with him he was a miracle just getting here x x x

I know a lady whos lil boy does. I will let her know about the thread. She will be able to give you some good links to support groups and things.

Don't feel guilty hunni. Nature is mean and cruel sometimes. We all have crosses to bear, some crosses we know of and some we don't. At least you know, and even knowing what you do now, I bet you would still give birth to your lil man a million times over regardless of the risk

no one at all ?

HI IM FROM PASSED DUE IN FEB  08 ,I HAVE A SON LENNOX WHO IS 25 WEEKS ,I HAVE 3 OTHER CHILDREN ,I HAVE VON WILLE BRANDS DISEASE AND WAS TOLD ANY CHILDREN I HAD WOULD HAVE A 50%CHANCE OF HAVING IT ,BUT ANY BOYS I HAVE COULD HAVE HAEMOPHILIA A,OR HAEMOPHILIA B .MY OLDEST SON 15 DOESNT HAVE IT ,MY DAUGHTER 13 IS A CARRIER MEANING HER CHILDREN WILL HAVE IT ,MY 3YR OLD DAUGHTER DOESNT HAVE IT AND IS NOT A CARRIER .BUT MY LENNOX IS SHOWING SIGNS OF HAVING IT HAS HE HAS HAD 3 SMALL BLEEDS ABOVE THE LIP ,BLED AT HIS JABS AND WAS RUSHED IN AT THE WEEKEND WITH 2 SMALL BLEEDS TO THE WRIST ,OBVIOUSLY IM VERY CLUED UP ON VON WILLE BRANDS BUT NOT ON HAEMOPHILIA,OUR CONSULTANT IS SENDING US TO A HEAMATOLOGIST ASAP .WE WERE TOLD WHEN LENNOX WAS BORN HE WOULD BE TREAT LIKE HE HAD IT AND TESTED WHEN HE WAS 1 LIKE MY OTHERS WERE ,BUT BECAUSE HE IS SHOWING SIGNS IT NEEDS TO BE SOONER,IN CASE IT IS HAEMOPHILIA,WE HAVE BEEN TOLD TO EXPECT THE WORST OUTCOME THAT WAY WE WONT BE TO UPSET .IM NOW TRYING TO COPE WITH THE GUILT OF PROBABLY GIVING THIS TO MY SON ,HE WAS A MIRACLE HAS MY PARTNER IS FIGHTING HODGKINS DISEASE FOR THE SECOND TIME AND WE WERE TOLD HE WAS 99.9%INFERTILE,PLEASE ANYONE WITH A CHILD WHO HAS THIS DISORDER GET BACK TO ME ,MANY THANKS LORAINE X X X