Pregnancy & Birth Clubs <
19/03/2014 at 17:36
I'm sorry to be a serial poster bu i honestly don't know what to do and am so angry and confused right now i feel i cannot make a decision....
i have a blood disorder which means my blood clots abnormally and is too thick, when you're pregnant your blood thickens again meaning you're at risk of blood clots anyway but with the added blood disorder my chances go up ten fold. after having a section with my last daughter i got a clot on my lung which again increases my risk of getting another clot greatly. as the clot was in my lung it was life threatening and i had injections of clexane twice daily and warfarin everyday for six months (ended in november) to disperse the clot.
i have three children and have had seven misscarriages, out of eleven pregnancies (this one included) only three of those babies survived to term those three surviving children were the only three i refused to take the blood thinner clexane, all seven of the misscarriages the babies died within two weeks of starting the drug. a consultant at the recurrent misscarriages unit told me the clexane causes misscarriage but "we don't care about the baby as we have to make sure YOU'RE safe" as I'd never had a clot at that point i just agreed to take an aspirin a day and my three girls survived. now, i HAVE had a clot i if i were to take that chance again i would be taking my life in my hands as another clot could very likely prove fatal.
basically, i said no WAY am i agreeing to take that evil drug KNOWING it will kill my baby, they said if you don't it will kill YOU!!! so they said "ok, what if we let you get to twelve weeks and then start you on it?" i said I'd think about it, I'm ten weeks today so basically i have two weeks to choose between my life or my baby's, i KNOW my baby will die once i start these injections and i just feel so trapped, angry and confused. I've already been through so much this pregnancy and my little bean has hung on and fought and defeated all odds so far and now they want me to just say "ok whatever, take the risk with his or her life" i just don't know what to do, my motherly instinct has kicked in BIG time and i will protect my baby with all i have but what if i lose the battle this time and leave my three girls with no mother??? I'm torn, please help, anything you can offer will help, anything at all. please i just need your opinions, what would you do??? xxxxx
19/03/2014 at 17:50
What does your other half think about it all??
Im really not sure what to say to you huni, i wish there was a magic wand i could wave and make it all better
Cant they let you go to 20wks first instead of 12 wks??
19/03/2014 at 18:05
he said losing me isn't an option he cries at the thought or mention of it so i tend to avoid putting on him too much . when he found out it looks like i don't have an option about having the injections he said "well we're going to lose this one then aren't we, it's going to die" tbh it doesn't help, i already frikkin KNOW that but that's all i get. i don't know if it's because he doesnt wanna be the one to have to choos but i just feel like this is all on my toes and it's a decision i don't want to make either. i have been thinking about telling them I'll wait till twenty weeks and tbh that's wher I'm at right now, not decided but it's the best of a bad bunch of scenarios in my head right now. i can't lose another baby, i just cant ESPECIALLY after how hard this baby has already fought to live but i don't wan to die either. iveweven considered telling them I'm taking it and not, basically lying which is something i don't do, i HATE lies but if it means my baby will live surely it's for the greater good? xxxx
19/03/2014 at 19:37
What an awful position to be in , my heart really goes out to you hun , is it a possibility to wait til 20 weeks ? is there anything else you could try ? I can see it from both sides , your dh doesn't want to lose you n obviously you don't want to risk leaving your children without their lovely mummy , but the overwhelming need to protect your unborn baby is such a strong feeling , I would talk it over with your consultant n see if there are any other options apart from the injections , wishing you all the best n sending you a big hug , good luck with whatever you decide x x
19/03/2014 at 19:54
19/03/2014 at 20:30
Huni i can see it from your other half side but i am also with you on this one, there must be some else they can offer if they know this drug kills your unborn baby why on earth would you want to take it! they have no right to force it onto you, and i can understnad why you would want to lie and tel them you will take it but wont.....its so hard huni and a lot for you to deal with on your own!
19/03/2014 at 21:08
thankyou ladies, i think i have come to a decision. it may be a stupid one but only time will tell...
i have another appointment in a fortnight and will be seeing mw for booking in etc tomorrow. i have had dealings with heparin and clexane (aka enoxaparin) for many years, the clexane they give you based on your weight, same as the heparin but the differences are on clexane you're just given the drug and expected to take it without monitoring for the entire pregnancy until baby is six weeks old (what they want me to do again this time) and with heparin (like with warfarin tablets which cannot be used in pregnancy) you have an inr (international normalized ratio) done every four weeks to check how thin your blood is. even offering me heparin would be a better option as atleast I'd have the peace of mind that they were keeping an eye on me but that said, with my middle daughter i was on heparin (bullied into taking it from 25 weeks) and ws given 25,000 u its more than i actually needed and nobody noticed (total medical negligence) which led to my placenta completely detatching from my uterine wall (complete placental abruption) and a massive hemmorage which VERY nearly killed me so my faith in that has been shaken also. there is absolutely no way the mw, consultant or anybody will agree to it being ok not to have clexane or heparin until 20 weeks as everyday imnot taking it I'm at risk of developing a fatal clot and ten weeks (I'm ten weeks now) is just too long to wait.(this is what they will say) but I've decided I'm taking NOTHING until they have referred me to a hemotologist and I've spoken to somebody who can advise me based on first hand KNOWLEDGE of my blood condition (factor v leidin mutation/apc resistance) and not just base their advice, like the consultant has, on "what they usually do in these cases" I'm not just a number, niether is my baby and we are a very unique and individual case so i want an individual assesment. i know i sound like an arsey cow lol but i know if i don't make a stand, either way, this decision could potentially affect me for the rest of my life. clexane is designed to help prevent blood clots but it causes bleeding which is what's happened with my mc's and eventually the baby dies due to hemmorage in the placenta.at twelve weeks the placenta is only JUST beginning to fully support baby and is very immature, my plan is to TELL them I'll wait until twenty weeks when baby and placenta are well established and THEN I'll accept heparin, not clexane as a prophylactic measure. does any of that make sense,I'm scared of making irrational and deadly decisions and it not being right due to my frame of mind if that makes sensd so I'd REEEALLY appreciate your input ladies. thankyou soooo much for your kind words, it means so very much and has really helped, anything you could add would be GREATLY appreciated xxxxxxx
19/03/2014 at 23:59
I definitely think you're making the right decision about wanting more expert advice... you should not have to accept a consultant's decision when he/ she is probably basing that on very little direct experience of your case.
i know it's a long shot but have you thought about contacting a high profile expert to ask for their opinion / consultation or direct care? They may say sorry they cant help... But they may agree... Especially given your history... & these types of doctors do relish the 'challenge' of working on unusual cases.
Have you heard of a doctor called Professor Kypros Nicholaides? He now practices with the fetal medicine center in London. I watched programs of his work years ago and was amazed at his dedication, & skill in working with extremely high risk pregnancies (eg performing surgery 'in utero' & regimes for trying to help a lady who had had several miscarriages as a result of her bodys antibodies attacking the baby). What have you got to loose by contacting him & asking for at least him to gave a phone consultation with your consultant??
here's the details:
The Fetal Medicine Centre137 Harley StreetLondon, W1G 6BGUnited Kingdom
Tel: +44 (0)20 7486 0476
Fax: +44 (0)20 7486 0294
Wishing you the best... Be safe & keep us posted! X
20/03/2014 at 05:48
thankyou sw2, I'll try anything!! i will be ringing the hospital tomorrow andd filming an official complaint. I'm also considering legal advice as i so very strongly believe if I'd have received appropriate care last time i wouldn't have got the P/E. the referral to the hemotologist never came through so i never saw one, not once in my entire pregnancy and nobody chased it up xxxxxx
20/03/2014 at 10:36
20/03/2014 at 10:39
Good luck today hope all goes well with the midwife xx
20/03/2014 at 13:29
thanks girls midwife has been, she took bloods etc and the scan referral has been made i spoke to her about yesterday an she gave me a letter that has been sent from a hemotologist to my gp, it said I'd have to take aspirin(have been doing this from four weeks anyway) and i should CONSIDER clexane, more so in later pregnancy due to multiple fetal loss!!!! basically everything i kept telling them. well I'm relieved but also like a dog with a bone now as i now know for a FACT they had no right pushing clexane on me this early and i was right about them just trying to cover their own arses!!!! i feel relived as hell but seriously pissed off with the jumped up consultant from yesterday and told mw i only want to see my NAMED consultant from now on, not her little idiot understudies!! they are so going to get full force of my wrath at my next appointment in two weeks, how DARE they!!!!! i see midwife again on Tuesday too, so at long last I'm being monitored and making some headway. i have decided i WILL be telling them to shove the clexane until I'm atleast in my twenty fifth week, the midwife agreed with everything i said. let them try and bully me next visit, they will get it back big time!!!! xxxxx
20/03/2014 at 13:43
Glad all went well and they are going to keep an eye on you now! about time!! its good she agrees with you and hopefully they will see that xx
20/03/2014 at 13:53
wether they do or they don't i shall be TELLING them that's what's happening. there was no mention of my previous clot in the hemotologists letter only of "multiple fetal loss" so I've asked to see him face to face, his opinion could change then but I'm happy for now and deffo wont be taking the injections yet, i will need both aspirin and clexane in later pregnancy and for six weeks post delivery but i can live with that!! i have something to back me up now for my next appointment, screw YOOOOU snotty consultant lol. how are you today hunni xxxxx
20/03/2014 at 14:07
So glad things seem a bit more clear / positive for you now!
20/03/2014 at 15:48
im doing ok huni
woke up at 6am feeling so sick i couldnt move from my bed, fell back asleep and woke up at 9am to find little man next to me with the sky remote lol been feeling sick all day i ate beans on toast for dinner that didnt go down to well xxx
20/03/2014 at 16:31
20/03/2014 at 16:42
thankyou so much for all of your support ladies, i can't put into words how much your advice ha helped me and really did make me feel stronger and able to stand up for myself.sw2 i will still be looking into the doctor you memtioned as as far as I'm concerned the more info i have the more ammo i have for when i am verbally bullied or stupified into the clexane again, which i know will happen. i clearly kno more.about my conditions than the jokers at the hospital who are supposedly my "health care professionals" and i have confirmation of that now. if they didn't kno about the hemotologists letter then i wanna know why they didn't check ESPECIALLY when it mean the difference between prescribing a drug that woul induce a mc and if they did know.about the letter who thr hell are they one to not tell me.about it and two to try and over ride the recomendations of a blood specialist!? these are some of the questions i will be asking them in a fortnights time xxxx
20/03/2014 at 16:44
hey samantha i have an aspirin buddy lol. will you b on it until birth hun or for six weeks postnatally too xxxxx
20/03/2014 at 21:13
Hello, keepthefaith: just wanted to say hurrah at your news today! So glad your midwife understood where you're coming from.
Hope you can sleep easier tonight!
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