Monday, July 18, 2011

I Just Have To Share

I primarily keep my deepest, most personal thoughts for my private journal these days. The past five years have involved moving to a new country, getting married in my 30's for the first (and only!) time, finding my part in a whole new community of people, getting pregnant, having a horrific birth injury that is only common in third world countries, learning to advocate for myself, going through the loss of a niece to stillbirth, watching my grandparents grow frail, losing a dear friend through a traumatic and sudden accident, losing the closest friendships I had in this new community (at least temporarily), and finding my place all over again in the midst of everything. So you can see why I don't put my heart out here with all of my thoughts and feeling available for everyone to see. A lot has happened in five years, both wonderful and hard.

Today though, well, I have to write about today here. Because maybe someday someone will need it.

Awhile back, my family doctor whom I'd learned to trust and appreciate decided to go back to school to become a palliative care specialist. That meant that I had to put my trust in someone who didn't know my story, who didn't know how long this birth injury journey has been. Thankfully, my family doctor understood how big of a deal it was after all I'd been through and he found a wonderful female family doctor who was willing to fit me into her already full patient load. And that new doctor took the time to meet with me and ask me if I had any concerns regarding this whole birth injury and healing journey.

And that one little question led to today. I got to meet with a gynecologist from South Africa. He's familiar with birth injuries and fistulas. He was also familiar with my story because he'd taken the time to review my records before I ever stepped foot in his office. He asked a few simple questions and I found myself responding as quickly and completely but concisely as I could. After all, I was just there to be fit with a little device that would enable me to run again. But we need to back up a bit.

First of all, this doctor happens to be in the same office building and just down the hall from the former office of the doctor who caused my injury. Though that doctor is no longer in that building, nor is she even practicing full time anymore, the idea of going into that building was not easy. For at least a year post partum, I fantasized about blowing the place up. I was that angry. So it's understandable that it was with some trepidation that I parked and entered that building for the first time in over two years. And as I climbed up the stairs I well remembered having had to crawl up just days after sustaining a fourth degree tear and other complications, I took a deep breath and hoped with all my being that this visit would be a good one that would not include a panic attack. I was proud of myself for having the courage to go there.

Secondly, I was a little bit of a mess today because I was over 20 minutes late for this appointment. I'd been stuck on the only bridge near us for over 45 minutes thanks to construction and people who were too busy to take turns. And I was a stressed out mess afraid of losing a precious appointment with a specialist, well knowing what wait times can be like.

Thankfully, the office staff was amazingly gracious and kind and immediately got me into the doctor's office. As I found myself telling a bit of my story, I was amazed to hear this doctor saying that he believed that things like failure to provide informed consent and failure to follow standard protocol happened during my child's delivery. I've been saying this for 2.5 years, but few have believed me. To hear a gynecologist not only saying it but suggesting that I seek official sanction of those involved was surprising to say the least. For every shred of affirmation or validation I've received in the past has had to be fought for. I've always had to present a passionate and solid argument, trying to win others to my perspective. But this time I barely had to utter a word. He knew my story from my records and he already knew that I'd suffered an injustice, a malpractice really, that led to a horrific injury that could have been prevented with a c-section. He actually said that I'd been given bad legal advice, not to mention inappropriate medical care during and after the delivery. But more importantly than that, he said what no one else has ever said. He said that this was about me as a woman and the injury that happened and should not have happened. Everyone else always focused on the fact that I ended up with a healthy child despite the unfortunate injury to me. But he was bold enough to focus on me and the importance of caring for the health and well-being of the mother as equal to that of the child. (This is hard to articulate, but I'm trying.)

I found out today that this man could have helped me from the beginning of my injury. He could have done the surgical repair, and if it had proven to be too difficult for him, he could have gotten me into see the most skilled Canadian surgeon here within two weeks (someone who was never even on the radar as a specialist I should see). As it was, I waited months to be seen for even a consultation and then had to endure invasive and painful tests that were unnecessary and ineffective. When I described what it was like to go through all of that and how the exams were so rough that all the physiotherapy I'd been doing to retrain my brain and body in the realm of pain memory was undone, he totally understood and mentioned that is why he never sends anyone to that particular surgeon. I don't hold any anger for those who sent me to the specialists in Vancouver, for they were only doing the very best that they knew how. My family doctor had never encountered anyone with my injury and neither had my maternity doctor, so they did the best they could to find a specialist for me by asking around. They just didn't know.

The only thing we can figure is that perhaps the Ob/Gyn who injured me did not refer me to this doctor down the hall from her when my complications first began growing worse because then she would have been found out, and referring me to someone in Vancouver (outside of our local health authority) would protect her from being humiliated or held accountable. I also found out that there are reasons beyond my own story that this Ob/Gyn is not practicing full time. This all made me feel quite vindicated for all the times I tried to share what my experiences were and all the times people thought I was too sensitive. The doctor I saw today could not believe that the Ob who delivered my son via forceps never mentioned the risk of a 4th degree tear or fistulas when seeking my consent, and he was speechless when he heard that they offered me a choice between forceps and a c-section, but then coerced my husband into choosing forceps after I asked for a c-section. He literally could not believe that they refused to accept my choice. But the thing is that he did believe me. He believed every word and he affirmed and validated me for all the hell that I went through.

He also affirmed my decision to seek physiotherapy with a woman trained in uro-gynecology and pelvic floor function. I've come a long way in the past 2.5 years thanks to my physiotherapist. Without her, I would still be unable to carry my son without incontinence, or enjoy marital intimacy without pain. He's the first doctor I've met who knew about it, believed in it, and understood that it's a very real thing to deal with muscle memory and pain memory. He's the first doctor I didn't have to sell on the idea of doing physio instead of surgery. And he operates on women with these issues. Amazing! In fact, it really is amazing that a doctor who primarily works in surgery would work with me to help me find a non-surgical solution for the remaining pelvic floor dysfunction I suffer so I could get back to running and climbing again.

After a long consultation, we finally made it into the exam room where he easily and gently fitted me with a pessary and taught me how to place it and remove it. And then he told me to go run and exercise and make sure it is a good fit. I did exactly that. I ran back and forth along our side yard, disbelieving that I was having no issues. So I went inside and jumped all over our living room, skipping through our suite. Still no issues. I felt like a normal woman who has never given birth, never faced pelvic injury. I still wasn't quite sure it was for real. So I did another test. In fact, I tried the test that is the gold standard. I jumped on the trampoline for quite awhile, stopping only when I was out of breath. If you are a woman who has ever dealt with incontinence, you know what a beautiful and fun gift this is. I haven't been able to jump or run for 2.5 years. My husband and I have a date at our favorite old running spot tomorrow, rain or shine. I can't wait.

I have no regrets for the journey I've been on, for I truly believe that God doesn't waste anything, and I know I've learned so much that will be valuable for others. While I would have loved to have had my fistula fixed quickly and in Canada, I am still and will always be grateful for the amazing surgeon in the States who had compassion on me and operated on me without a fee. I'll always be grateful for my old Ob/Gyn in my former home in the States who walked with me through this and made sure I got good care on his watch. And I'll forever be grateful to the Catholic hospital in the States that lowered our bill and enabled us to pay in full without bankrupting us. I know that the interactions I had with the various staff people in billing were beneficial to them as well as to me. And all of this experience has left me with a knowledge of and a passion for obstetric fistula care in Africa and Haiti. If I'd had my way and had a c-section, I would never have learned about the hundreds of women who suffer this injury without the medical care I've had, and my capacity for compassion and advocacy would never have had an opportunity to grow.

Even though I lost so much time with my child and suffered so many other very real losses because of this injury, I have gained and am gaining a great deal. So even though this isn't the story I would have written for myself, I am confident that it is ending with hope. And that is the best ending to have.

***If this helps anyone at any time now or in the future, this attempt to be so intimately transparent and very authentic will have been worth it. And if you ever need to talk to anyone about a birth injury, incontinence, pelvic floor dysfunction, PTSD related to a birth experience, or any other post partum issues related to a traumatic birth, feel free to view my profile and find my email there. Also, Solace for Mothers is a very helpful resource if you find yourself dealing with a hard birth experience. You'll find just about every kind of story there, everything from women who are ant-hospital/anti-intervention (not like me) to women who are pro-intervention (like me).


sarah said...

Amazing. I have followed your story for such a long time - through the dark days - and it is a joy to see you finding the light again.This has been such a long journey and you are an inspiring lady. Sarah x

Kork said...

Oh I am so thrilled. I have goosebumps. God is so good.

Kork said...

Hooray! God is so good.

Layla said...

My eyes teared up for you while reading this, but because I'm so happy for you!!! And what you said - God wastes nothing - I needed that. That was perfect. You're right, he wastes nothing.