Friday 14 September 2012

Looking for the path to the other side

I've been horribly sick this past week.  Anything and everything associated with a really bad cold, I've had.  Sore throat, that turned into a horrible dry cough, that turned into deep chest congestion, that turned into more mucus imaginable to man, that turned into sleepless nights... and has finally settled down to lots of nose blowing, wet coughing, and still ... no sleeping.  My mucus has changed from thick and green to less thick and yellow... to now mostly clear (you're welcome).  My voice is totally shot, and I sound like a 12 year old prepubescent boy.

It's just been awful.  And I tell ya, there's nothing like getting sick to make you feel like losing your baby is the most unjustifiable, sad, life ruining, horrible thing that's ever happened to you... all over again.  I just feel like I cant catch a break.  How can I be this sick, AND have my baby die?  It's just not fair...

***
Maybe I'm being dramatic... but I need everyones help.  I just cant seem to get a grip on my care during a subsequent pregnancy.  And it's terrifying. 

Care here in Canada is very different than in the U.S.A.  Health care is "free" and seeing doctors of your choice isn't all that easy.  I don't even know who I need to see... and what kind of care I'll need after having a stillbirth. 

Ah, I'm all over the place here.  I'll just spit out what my concerns are...

The only people I have to talk to about becoming pregnant are my GP and my grief counsellor.  They continue to tell me that when the time comes, they'll refer me to the "best" there is out there.

When I asked about having a consultation... or "meet and greet", I was told I'd have to get the hardest part out of the way first, which is getting pregnant and staying pregnant. 

When I was told who I'd probably be referred to if I make it out 6-7 weeks with the next pregnancy... I looked him up.  We'll call him Dr. S. 

Dr. S is a perinatal specialist.  That's... good... right?

I put his name into a "rate your doctor" site.  38 out of 40 comments came out good.  But I read in between the lines in the good comments... and it turns out he doesn't really look after the health of the mother as a regular OB would.  Maybe I'm wrong...?  I was reading lots of ladies commenting that they had to go to their regular OB for the 6 week postpartum, and that he doesn't check the baby after it's born (???) 

When I was pregnant with Alexander, my OB told me that I had 2 options for the birth plan.  She could check him over, and be the first to give him his bill of health, or I could request whomever I chose to be his pediatrician come at delivery, and give the bill of health.  (And what is also kind of ... unfavourable... is that my GP - who is NOT a pediatrician - would by default become my child's doctor.  Only if there is something that deemed my child 'at risk' would he then have to be referred to a pediatrician).

It seems as though the Canadian health care system, as free as it is, is very limiting.  Everything is based on referrals.  And bottom line... you just don't get the best care unless you absolutely fight for it tooth and nail. 

And it could be unfair to say "Canadian".  I might just be pigeonholed here in Ontario.  My social worker used to live and work in Montreal and she's the first to tell me that things are very different here.  I noticed that too when I took that fall last year while on business.  The doctors and nurses in that Quebec hospital were... better? (sorry ON docs).

So, if I go with Dr. S next time around... will I still need an OB for myself?  Or just a gynecologist?  I need to find a doctor that offers both mother and baby care.  And from the reviews on Dr. S, it didn't sound like he specializes (or offeres) both. 

I read one women say that Dr. S doesn't do any cervical exams nearing term.  And, AND!  He doesn't swab for GBS... the patient had to do an 'at home' swab and bring it to the lab. (???)

(and the biggest thing that's got me all in a fuss is that I read several reviews from women where Dr. S performed unnecessary episiotomies to "help things along" with labour, and the women were left with very ouchy type complications after birth, and went on to deal with months of postpartum discomfort.  And when these women had follow up's with regular OB's and GP's regarding their new found ruined vagina's... they were told often times doctors - particularly important high risk specialists -  get impatient with women pushing, so they cut open the gate to get the baby out quicker.  Yikes!!)

Honestly, if I could replicate my birth experience with Alexander but replace him being dead with him being alive... that's exactly what I want next time around.  Nobody pushed me into doing anything I didn't want to.  Nobody told me I wasn't doing a good job, or that I had to do something differently.  Everyone was so sweet and understanding, and anything and everything I did was absolutely fine with them.  I was induced and in labour for 9ish hours... and then I pushed for 20 minutes.  I didn't need anything cut, or vacuumed, or clamped.  I had quite a few stitches, but the doctor who cleaned me up took her time, and was very detail oriented (I could have sworn she was knitting me sweater down there).  I healed well, and didn't get any infections or walk away with any complications.  It was absolutely perfect.  I just had a dead baby.  Pretty much the ONLY thing that matters when you walk away from it all, I didn't get.  But I couldn't ask for anything better regarding the rest of the birthing experience.

I don't want to say I'd want it all to go differently to have a live baby.  I would if that meant I'd get one.  But I'd be lying if I said I wasn't scared shitless about everything else going AWOL while trying to birth my next child. 

Yes, I'll do anything and everything the doctor tells me if that means we get the kid out alive.... but is it completely selfish of me not to want to be put through some unnecessary manhandling (of my lady bits) while in the process?  Maybe I'm just sick right now, and all I can think of is the worst... but I feel like I'm going to be put through an inevitable hell while in the hands of the "high risks" to get this next baby here alive. 

I can just imagine some sinister, all-important high risk doctor with his head buried deep in between my thighs with a pair or scissors while I'm pushing my damndest to get the next baby out. 

"Do you want this baby out alive???? Then let me cut up your vagina to the point where you'll never be able to pee the same again!! Ha-HA!" snip snip snip snip...

God, you'd think I'd make it out of a trimester or two in a subsequent pregnancy before senselessly worrying about this stuff.

***

So if there's anyone from Canada, specifically ON, who has made it to the other side with another child (or is making it now) after a loss... how did you do it?  How are you doing it now?  I just cant seem to find any "right" way to go about this.  I really feel the system has left me to fend for myself, and even when faced with options... I still feel lost.

Were you able to call the shots, and switch doctors, and get matched with the best fit for yourself?  Please email me.  I've read on so many U.S ladies having subsequent pregnancies, and it seems there are a lot of hands in the pot to ensure you have a living baby at the end.  For anyone outside of Canada and the US... how did it work for you?  Was there a detailed protocol for getting your babies out alive?

I know this is a really whiny post.  But being sick sucks.  And trying to figure out anything while you're sick is nearly impossible.  I just need some comfort right now...and I'm turning to my BLM's for any feedback and support.

And to get something off my chest...most people who work reception at doctors offices are bitches. yeah. I'm gonna say it. They're all impatient, absent minded, clueless... and they don't listen. I hate them all right now. 

Side note:  Please excuse any grammatical, punctuation, or spelling errors.  I've had a lot of NeoCitran over the past 6 days.  I'm proud I can still spell my name.

10 comments:

  1. I'm sorry you are feeling so crummy. And you have every right to be dramatic. It is hard to explain to anyone else how grief makes it harder to cope with everything. My ability to roll with the punches (terrible cold, lack of sleep, bitchy receptionists) is shot.

    I'm in the US, but we used the high risk perinatal doc as a consult only (at 12, 14 and 20 weeks) and have seen the midwives I like the rest of the time.

    Obviously, healthy living baby is more important than birth experience, but I totally get still wanting it to be as good as it can be for you and baby. We've spent weeks talking about this in my house.
    From working at a high risk hospital, I think the intervention/c-section rate is very high among perinatologists. Maybe you can see your OB and Dr. S? Is it possible to switch to a different GP? For goodness sakes, it seems like your first baby dying should allow your second baby to have a pediatrician?!

    I'm sorry for all the bureaucracy and lack of access to proper info and care! I hope others have good advice. Hang in there!

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  2. Hello!

    I am in Ontario and can share what we had to do after the loss of our daughter. After Ava died we had heaps of OB's wanting to follow up with us because of the absolute anomaly of what occurred. Most of them simply wanted to write papers or be part of the medical mystery that was our daughters death. It was very, very overwhelming. We chose do to our 6 week follow up with the OB we trusted the most (we also had the care of a midwife.)

    After we began to research our options we wanted to know our chances of having HELLP happen again. We needed a specialist. We asked our midwife who the TOP person would be to meet with, he turned out to be the MFM OB Specialist whom is the chief of OB for a large local hospital. We then went through the VERY LONG process of getting referred to him...this was the hardest part. Essentially my midwife had to stage a sit in at his office until they would accept our referral, ridiculous! Either way that is how we got our initial visit with him and are now on his case load.

    What I would recommend is talking to your GP about who is best suited to help you. An MFM or a different specialist. THen get your GP (if you do not have a midwife) to act as a liason to get you into their office. Once you are there you can find out what services they can offer. MFM's in Canada are also OB's, so you will not need both if you go that way.

    Hope that helps...and that it makes sense.

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    1. Dear Melissa,
      I'm happy to hear that after the loss of your first born you had somewhat of an outreach to want to learn more about your story. Here, maybe it's a Toronto thing... or maybe it's the fact that I had a bad, lazy OB - but I and my stillbirth were completely swept under the rug as an "unknown" case, and the book was closed. An easy thing to ignore I assume from the outside medical world. Even when the autopsy results came back, my GP completely dismissed the facts found about GBS...and presumed the entire ordeal to still be "unknown". "Now, don't worry about having more children."

      I am currently on the look out for a new GP - someone who is interested in caring for women in their child bearing years.

      I have an appointment tomorrow with a GP who also works in low risk obstetrics...so knowing she wont be able to take me on through a subsequent pregnancy, hopefully she ushers me off at my request to a HR MFM at Mount Sinai.

      Thank you for the info. Every little bit helps

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  3. I don't know anything about Canadian healthcare (other than we idealize it here in the US.."at least in Canada everyone has healthcare...", but that is not really relevant). But we were not technically labeled as high risk this time around, because Kayla died from a clear cause, that was not genetic, so no 'extra' risk of it happening again. However, my OB really worked with us and set us up with an MFM, whom we saw at 12 and 20 weeks for the in-depth scans and genetic testing. But it is so important to have a doctor who really cares and really WANTS to make sure you have a living baby. I Hope you can find someone really good.

    Also, I thought I really wanted a natural birth with Livia but once I got close I realized I only wanted that in theory..what I Really wanted was to be constantly reassured that she was ok, and in my case that involved quite a few medical interventions. It is still her birth story you know, and it had such a good outcome (ALIVE!) that I Was ok with the way everything happened.

    Hope you feel better!

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    1. And I do t mean to sound ungrateful. I know I'm lucky to have had the health care I've received in this life. Back in 2008 I had a freak neurological dIsease...lost all motor use on the left side of my body...had to undergo countless tests, MRI's, CT scans,...probably would have left me poor...like, 500k plus to cover the resources, and testing I had access to...but because I'm here, it was "free".
      I was an asthmatic child, and had inhalers, machines in my room at night, several pediatricians...house calls. Probably would have put my parents in debt, but because I'm here, Im covered.

      So yes, I'm thankful for the healthcare system here in Canada. I'm just having a hell of a time getting it to work me in my child bearing years.

      My GP also told me I am not *really* high risk. It was such an oddity, and that it PROBABLY won't happen again. He's a firm believer in "lightening doesn't strike twice". I should direct him to a few BLMs that could prove otherwise.

      I'm trying my darnedest. I hope to get it all working for me soon.

      Thanks for reading, and for lending whatever advise you have.

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  4. Oh Veronica, don't judge yourself for feeling extra down. Like Mama Bear said grief obliterates your ability to cope with even day-to-day challenges.

    We live in the U.S. We were able to meet with two different local perinatalogists after A's autopsy report came in to see if they could discern what happened. They have different, though similar theories, but nothing conclusive.

    This pregnancy we're not considered "high risk" either because nobody knows why A died. But we'll likely get some extra ultrasounds and NSTs toward the third trimester. We continue to see our regular midwives and had our first consultation with the hospital perinatalogist at our 19-week anomaly scan. We'll see her monthly for ultrasounds to check serials growths. But ultimately is the midwives will deliver this baby.

    I am very concerned about trying to have as natural a birth as possible even though I'll be induced (starting right out the gates with an intervention) and I'll also be terrified of all that could possibly go wrong during labor and delivery. For that reason, we've hired a doula to assist with this birth. Hopefully that helps our odds of declining interventions. But honestly, as this pregnancy creeps by, I'd go in for every test in the book and even a scheduled c-section if it ensured a living, breathing baby. My attitude has certainly changed as the pregnancy as progressed. Perhaps it will continue to do so.

    The only other insight I can offer is that this time around I am much more assertive. I ask many more questions, I insist on tests or follow-ups. I am not constrained by politeness like I was before. I don't care if every person in the midwives' office and in the hospital think I'm a selfish, nasty freak. I do not care. The only thing that matters is this kiddo.

    I sincerely hope you can hook up with a provider who you feel comfortable with and who will advocate for you, because let's face it, we don't have a lot of energy these days to advocate for ourselves or like you said, fight tooth and nail.

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  5. Sorry to read that you've been so sick. I've had pretty much exactly the same thing over this past week, your description sounds horribly familiar! I don't know. I often have this feeling now that minor irritations and upsets are THE FINAL STRAW!

    I've been thinking and thinking about this post and trying to figure out if any lessons I learnt over here in the UK are applicable (we also have free healthcare with its concurrent lack of choice! Swings and roundabouts) and I know that I felt frightened because 'he who pays the piper, calls the tune' as they say. I didn't know what I COULD insist upon if this is a free service, I felt I had to be grateful for what was provided! You do, sadly, have to FIGHT.

    I do think that, sometimes, us BLMs think that we aren't allowed to shout about our own needs. That, as long as the baby is alive, they can hack to us pieces. And of course, we would let them, IF it were necessary? Could you try expressly asking your doctor NOT to do an episiotomy unless strictly necessary? I had one with R but had a sweater knitting repair so don't feel anything, either positive or negative, about the experience. Could you ask for somebody else to do the repair? If it's necessary?

    I think that, in many respects, the 'inconclusive' cause of death part is the most difficult. I apparently had a conclusive cause, twins. But oddly enough you get the same, shrug of the shoulders and an 'it won't happen again' reassurance. Turns out I have a dodgy cervix which is a risk factor in itself. Hah!

    Don't know if you are still looking for any Canadians insights but, if you are, I'm happy to forward to a few lovely Canadian BLMs that I know? Drop me a line if you'd like me too, just didn't want to share your blog without asking first!

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  6. Hi - I'm a Canadian BLM friend of Catherine and I'm so sorry for your loss. I've typed two long responses to this now and lost them both times (!!) to Google glitches. Sigh. Take three: I am sorry the referral process is frustrating to you. I've never been bothered by it because I have seen it as a check to stop abuse from people who would go willy-nilly to specialists when they just need a GP. Also I have never had trouble getting in to see the specialist we wanted (sometimes a bit of a wait - but hey - we can access care and not go bankrupt). When I read this post I feel like you want an OB for the skill and knowledge to give your baby a good chance - trusting their care medically - but the type of care is not what you need emotionally (they don't see you all the time, no or little post-partum care). I have six children, five who are living. Our fifth child died during my labour. We don't know for sure why (we opted not to have an autopsy as they are so often inconclusive) but it is likely due to fetal maternal haemorrhage. Our sixth child was born last year and I had exceptional care through pregnancy with a midwifery group. It gets a bit complicated because I didn't fully understand their model (shared practice with two GPs with OB privs - I had the worst physical birth for my first with a GP who had OB privs and didn't care about me or baby - just her schedule) - so I ended up with a GP for the delivery and cried my eyes out - midwife came as I was pushing. I love, love, love the care of a midwife. It's just different - they are with you and for you. They do the postpartum checks. Anyway, if you want someone who is Canadian and has been through prenatal and deliveries with different types of care I am happy to share my thoughts and experiences with you. We can connect if you think this will help. I'm so sorry for your loss. Having a baby after the death of a baby is hard, and I say that as a woman who had four healthy, happy deliveries before the unexpected death of a baby. My heart goes out to you, too, being sick now. It does suck. You already have enough to deal with. (((Hugs)))

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    1. Karen, thank you for your reply. It feels good to know I have support.
      I found myself to be such an unreasonable skeptic in this after loss process. I was thinking that a midwife group would be something I could benefit from in this post loss/subsequent pregnancy world I now live in, but I read something on the midwives of ON site...the words "specializes in low risk pregnancies" caught my eye, and I just SHUT DoWN that option. I really want to learn more about it, I'm just so fearful of falling through the cracks because so many health care providers have already told I'm not considered high risk.

      At this point in time, for my own sanity's sake (and my poor mothers. She's a nervous wreck thinking about the care I'll receive for a subsequent pregnancy), I need to be under the watchful eyes of a high risk MFM OB for the latter part of my next pregnancy.

      One of the reasons I'm so gung-ho on getting a specialist is because I know the difference in the quality of care. I was under the care of a neurologist for about 6 months when I contracted a freak autoimmune disease. He was so detailed in his work, and he also had vasts amounts of knowledge about everything else generally known when one is a doctor. I see him for anything and everything regarding residual or adverse symptoms relating to my prior condition. I even saw him when my right leg started to go numb after my first trimester, and was able to explain exactly why. When I told my OB about it, she was clueless. "some things in pregnancy can be dodgy when it comes to a woman's circulation..." and that's all I got from her. When I went to see my neurologist about it, thinking I was relapsing, he was able to name the condition related to pregnancy where the growing uterus pushes against a specific nerve and causes a "T" shaped patch of numbness on the right leg that is quite commonly know to occur in pregnancy. It had nothing whatsoever to do with my circulation, and more so, my OB didn't even press to look into it. And this is just a very specific example. There are many more I could bitch about regarding the care I received while pregnant with Alexander...and it's just all worn on me. My trust in GP's and OB is mostly gone. And I am now jaded to the point where I don't believe a single one will properly care for me.

      It's something I'm working on. I'm trying to widen my scope. I'm trying not to sum up the healthcare system based on my experiences alone...but it's hard.

      I love reading about other Canadian women and their pregnancies after loss. It certainly boosts my faith in the system.

      Catherine has been so great to introduce my story to several Canadian BLMs, and I'd love to hear you weigh in on the good and the bad when it comes to the care you've received throughout all your pregnancies.

      I know life is busy, and I for one have been horrible with my correspondence lately, but you can email me anytime. Reflectingstill AT gmail DOT com. I'd love to learn more about your suggestions and personal experiences.

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  7. Hey, I don't know if you'll read this since it's a comment on an old post, but I'm a fellow Canadian BLM. I'm considered high risk due a heart defect so all of my care is high tech. I'm also a nurse, so that helps with navigating the system. Where do you live? The high risk group at Mt. Sinai in Toronto is good, but I can give you more detailed info on them if you want to e-mail me. I'm at fireangel117@hotmail.com

    Hope to hear from you!

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