Devastated and heartbroken

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Re: Devastated and heartbroken

Post by » Mon Mar 21, 2011 09:33 pm

Your stor is truly hearbreaking. I felt like I was back where I was right before our son Benjamin was born. Our stories are so alike and I battle with anger toward my doctor and midwife as well. August will be 1 year he is gone. He was born at 26 weeks and lived for 4 months in that nicu.I thought we would take him home at the end of it all. There is nothing worse then going through what we have. I just want you to know you are not alone. Reading these posts though it makes me so sad has also helped me alot. Here,we understand. Sending love to you. xoxo

Re: Devastated and heartbroken

Post by Jackie R » Mon Mar 21, 2011 11:06 am

Also, i found that the way to maintain IUGR is bedrest. Is that true?

Re: Devastated and heartbroken

Post by Jackie R » Mon Mar 21, 2011 01:22 am

I know that I am not allowed to post any hospital names in the posts but, I keep regretting everyday that I did not have Mia transported to a childrens hospital in philadelphia because I found out that they have the best NICU in all of U.S. Initially, while Mia was doing great I started to do research but my husband said that I was insane to have our small baby girl transported to another hospital when we were already in a level III nicu and that it was impossible and he said why would we if she was doing so good...

I will never forgive myself now and the what ifs are endless in my mind. Why was I so dumb to listen to my husband???!!!

Re: Devastated and heartbroken

Post by Jackie R » Wed Mar 16, 2011 00:09 am

Hi Caryn,

All im doing now is searching for drs and peri. that will look into my records and give me some insight on my condition. Unfortunately, a lot of doctors are saying that my dr "could have done other things" however, they can not comment or review records because they all somehow I guess know each other and see each other at conferences. I read many positive posts here about women that were lucky to have been treated on time and had successful deliveries and Im very happy for them but it just seems so fair that my DR didnt even try anything...even if theres no proof at least try.

Also, I am trying to find a neonatologist with NICU experience to review Mia's records because i have found certain things that they did wrong such as speeding up the feeding amount which should ve been done very carefully and slowly with premature babies in order to give time for their intestines to mature.....I have had no luck in that bc most of the known and very good NICUS in NY are also somehow connected with one another. I dont mind paying out of pocket for any of this...I just want answers at least for my daughters care.

I know you guys might think Im wacky, but im so desperate for answers that I went to a few very good psychics and without disclosing any info they all saw that I lost my daughter, approx. when I lost her and all said that she didnt pass from natural causes but because she wasnt taken care of improperly by the medical staff and was given a dosage of something that was too much which resulted in toxicity...which is all true...she bled internally and externally and suffered a cardiac arrest which the nicu drs couldnt even tell us a straight answer of either Sepsis or NEC but later determined it was NEC supposedly. However many babies who develop NEC dont bleed the way my baby did. She bled from every little hole and had blood even around the pupils of her eyes...this is horrible... a mothers worst nightmare to see her precious baby do great for almost a month and then be in this tragic condition out of nowhere. I dont live anymore, Im just barely surviving.

Re: Devastated and heartbroken

Post by caryn » Tue Mar 15, 2011 06:05 pm

Jackie, no therapies actually help; some people would have gone on being pregnant longer regardless of what was tried to help, and some people are not able to continue pregnancy any longer period. There is no evidence that bedrest or meds or *anything* does anything to delay onset or severity of preeclampsia - when they have been tested in randomized populations of women, there is no effect when the tested populations are compared to a population that doesn't receive any therapy. I'm quite certain, after watching thousands of posters here, that the outcome of this pregnancy was predetermined when you got pregnant - too many women get bedrest and monitoring in the hospital and end up with abruptions and dead babies. Too many women have no idea they're sick and take home a perfectly okay baby after biking a century the weekend before delivery. There's no rhyme or reason to how this disease sneaks up on people. It's very hard not to blame ourselves for doing something wrong, but since there's nothing that actually works on this disease, it can't be anyone's fault.

That said, I think it is very hard to find a care provider who listens to our concerns seriously. My midwife entirely dismissed my concerns too. That's completely backwards from how a health care system ought to work. I've found a few people local to me whom I'd trust with my care were I to get pregnant again, and the trick was finding MFMs who went to the same conferences the Preeclampsia Foundation attends. :D Have you had a followup appointment with an MFM to discuss how this last pregnancy was handled and what went wrong?

Re: Devastated and heartbroken

Post by Jackie R » Tue Mar 15, 2011 12:10 am

Thank you very much teresatolman for your comforting and kind words. I am very sorry for the loss of beautiful angel Hannah. It must be so difficult to have to see the Dr when you are at work but you are a strong woman and I give you a lot of credit and respect.

The more research I do and am able to put the pieces together, the more I realize that my obgyn really really screwed up big time-he completely neglected my care. I was showing elevated AFP and slightly low amniotc fluid much earlier when he would have had the chance to at least make some kind of recommendations to at least try to help my Mia. I wish someone would have at least said the word "preeclampsia" to me instead of letting me think that everything as ok. They did absolutely nothing (the Dr and even the MFM dept. for the exception of an ultrasound every 2 weeks). If caught early, a lot of women are put in a dark room without any stimuli and ae closely monitored and it seems to help. Even baby asprin or other meds tends to help eventhough its not proven. But anything that wouldve been tried wouldve been better than the outcome that I have to live with everyday for the rest of my life....these Drs had a chance but they treated me and my baby like some number and even drs who treat patients like a number at least follow a bit closer than what my dr did to me!! I was telling him and his nurses that my head feels like its under water and they tell me its not pregnancy related!! My ankles were cracking and I asked him if I should be on bed rest and he tells me no. How can I be so dumb to listen?! If only i knew the word preeclampsia then. I hate drs. and i will never trust anyone in the medical field ever again.

Re: Devastated and heartbroken

Post by teresatolman » Fri Mar 11, 2011 03:46 am

I am so sorry for the loss of your precious Mia. While my story is not the same as yours, I do understand that intense devastation and anger that you are feeling. Especially your feelings directed toward your OB doctor. I wish I could tell you that time heals all doesn't. It will get easier, but it never goes away. I am a nurse and have to work sometimes with my former physician. I hate him. I have considered changing jobs at times because the sight of him walking down the hall makes me so physically nauseated in a way that only people like you could understand. I want to take him and shake him and scream at him and say,"I am glad that you get to go home to your family at the end of each day and pretend that nothing is wrong but your ruined my life! I don't get to go home to a little girl. I get to take flowers to the cemetary instead. You robbed me of my life and my happiness BECAUSE YOU DIDN'T LISTEN TO ME!!!"

But instead I do nothing. I just ignore him and carry on in my day and let this hate and anger eat away inside of me like a cancer destroying everything it comes in contact with. I remember waking up in the ICU and feeling so pissed off instead of greatful like really??? Why did you guys even bother to save me? All I wanted was to be with my daughter. It wasn't that I was suicidal, I just didn't want to live anymore. I don't care what people say, there is a difference in the two.

I think in this situation it is normal to wonder what if? What if you and I had gone to different doctors? What if someone else would have seen something ANYTHING, that would have saved our daughters? I guess my point is, even after three years I still sometimes wonder why. Why did it have to be my baby? I am praying that you can find the support that you need. Please don't blame yourself for what happened. I know that's kind of the pot calling the kettle black because I do it too. It is an easy trap to fall into. These events just get set in motion and we are powerless to stop them. Just like we can't prevent the wind or the rain, we can only try and survive the storm. I hope that you will find comfort from some of the people in this forum. I know I have. Please know that you are never alone. My love and prayers go out to you.

Re: Devastated and heartbroken

Post by caryn » Thu Mar 10, 2011 01:48 pm

Jackie, that is precisely why we are here - women find this forum after the trainwreck and want to know WTF just happened. Existing pregnancy books are pretty useless, and putting all the research into a coherent picture takes quite a lot of time.

The links in my .sig are a good place to start sorting the research into an explanatory worldview. Preeclampsia is a disease of the placenta, where initial implantation has gone wrong. Because placentas alter the maternal metabolism, any correlation between diet or sleep and outcomes is very likely *caused* by the broken placenta in the first place, and isn't something that can be changed by the mother to affect outcomes. In other words, weird sleep behaviors in pregnancy aren't causing preeclampsia; one symptom of preeclampsia is that the placenta triggers weird sleep behaviors in the mother. It also causes changes in appetite, changes in mood, an increase in anxiety (placentas upregulate maternal cortisol levels) and a bunch of other stuff.

Smoking does seem to lower risk of preeclampsia, but it also has other very serious pregnancy impacts and no one advises pregnant women to take up smoking. The link between smoking and risk has led researchers to find some related biological pathways, but they are a long way from a treatment based on those (or anything, really.) At the moment, the big research pushes for bench-to-bedside application are twofold: we want a test that predicts who will develop preeclampsia before symptoms appear (this is likely to be available very shortly in the US and is already available in Europe) and we want some therapy that will allow delivery to be delayed for 48 hours so that there is time to get the steroid shots on board and enhance lung maturation, which ought to generally shorten NICU time. For all preemies, we'd like a cure for NEC, too.

Proteinuria happens when the maternal vasculature, including the vessels in the kidneys, is damaged and all sorts of proteins fall through the holes in the vessels and out into the urine. Dietary protein intake isn't really related to this at all, except that after the placenta has caused the damage, eating more protein means that there are more proteins in your blood vessels to fall out. But your body is synthesizing proteins all of the time, and the proteinuria in preeclampsia is "non-specific", which means it isn't just dietary protein but also synthesized protein (and, in extremely bad cases, entire red blood cells) which are falling through the holes and into the urine.

I doubt there's any correlation with breast implants. There is a correlation with autoimmune disease, but as I understand things at the moment that's more because PE, or rather pregnancy and the bit where your body is dealing with a foreign organ, "unmasks" your tendency to autoimmune conditions. Chronic hypertension is probably a form of autoimmune condition.

Again, I am just so sorry. This disease sucks.

Re: Devastated and heartbroken

Post by Jackie R » Thu Mar 10, 2011 01:50 am

Thank you very much for your sympathy Lola. Frogibe thank you as well and I really do hope Mia and Kelsie are playing with each other-they really are beautiful precious angels which one day we will all be together again..thats what I just have to keep telling myself-that Mia is always with me no matter where I go.

Lee Ann, thank you very much and my heart goes out to you and your precious angel as well. I find your words to make sense and to be comforting. I truly admire your strength too. NEC is truly devastating. Thank you ladies for being here for really means a lot and I truly appreciate it.

Re: Devastated and heartbroken

Post by Jackie R » Thu Mar 10, 2011 01:37 am

Btw, my obgyn found elevated AFP at about 16 wks which he called me on a Fri. before labor day weekend telling me I had to wait until Tues. to get an ultrasound. Of course, I freaked out and told him i need to go immediately bc I wouldnt rest over the weekend. Why would he even do that if if he wouldnt let me come in..just to worry me? But i got to an ultrasound immediately from someone he referred me to after my persistance. Anyways, he only explained to me that elevated AFP can mean neural tube defects and/or spina bifuda which the ultrasound showed luckily Mia didnt have.

Today I find out from a high risk Dr that my Dr should have explained to me that elevated AFP can be an indicator of possible PE or other complications later n my pregnancy and that I shouldve been monitored much more carefully, especially after Mia was showing SGA and IUGR I shouldve been monitored 2x a week instead of just U/S 1x every 2 weeks. How could my dr at that time let me slide through the cracks like that and yes at that time I googled spina bifuda and NT defects but figured I was in the clear w my baby bc my Dr told me everything was fine....Wow im so furious...i wish i could turn back the hands of time and never walk thru this drs office.

Sorry ladies...but im venting.This is all new to me especially when I only found about PE when I was hospitalized w severe PE. This stupid book that i was reading "What to Expect When Your Expecting" didnt do me any good.