The Struggle for Our Lives

If you asked me before September 7th, 2016 how much I thought about my own mortality, I would probably say “never.”  As a psychiatrist, if one of my patients told me they think about dying everyday, I’d approach it the way any psychiatrist would, by listening, exploring, and figuring out the best possible treatment plan.  Nothing I couldn’t handle. But when it came to me, I found myself constantly ruminating over all possible outcomes and wondering, how did I get here?  I re-play that moment, the moment when everything changed, over and over in my mind.

I was laying on my couch with what I believed to be my usual migraine pain, waiting for my husband to bring me a mouth-watering walnut chocolate pie from Marie Callendar’s. Suddenly as I arose from my couch, a rush of pressure filled to the top of my head, and I let out a scream louder than I have ever screamed before. I called my husband and urged him to come home immediately.  I yelled, “This isn’t a migraine anymore!”  As a doctor, I know that the term “worst headache of my life” raises scary possibilities, but I couldn’t describe the pain in any other way.  Worse, I was also 31 weeks pregnant with my first baby.

I knew that nothing could ease my pain, and that I needed to get to the hospital.  However, since I was young and otherwise healthy and my pregnancy had been smooth, I figured I would just go in, get hooked up to some IV fluids, get some Phenergan, and then head home. Nothing too serious.  When I arrived at the hospital, I was taken straight to Labor and Delivery where I was hooked up to fetal heart monitoring. Thankfully, my baby’s heart rate was fine. But momma’s headache was only getting stronger.

As I expected, the on-call obstetrician ordered some IV fluids and Phenergan for me.  But nothing changed with my head pain.  The OB team then transferred to the Emergency Department (which wasn’t really a transfer, because I had to wait in the waiting room before getting a bed).  I spoke with the ED doctor and let him know I was also a physician. This doctor then had the nerve to ask me, “Are you really telling me this is the ‘worst headache of your life’, because that will get you a CT and an LP.”  I was in disbelief that the physician was second guessing my description as I truly could not describe the pain in any other way.

I considered the risks of exposing radiation from a CT scan to my baby, and an LP (lumbar puncture, also known as a spinal tap), was the last thing I desired to have.  We decided to focus on controlling the pain before pursuing any other diagnostic tests.  I was given morphine, which helped take the edge off, but the pain was still very strong.

Various family members began trickling into my room as I tried to fall asleep.  I hoped by the time I woke up, all of this would have gone away – maybe it was just a bad dream.  Hours went by and the pain was only slightly better.  The ED doc asked me if I wanted to be admitted so that I could be observed further.  Again, I was appalled by his question. I get that I’m a doctor, and I get that I know the brain maybe relatively better than he did, but was he really asking me to confer on a treatment plan while my brain was about to jump out of my skull?

I got admitted to the Med-Surg unit where I woke-up to a relative improvement in my pain symptoms, thankfully.  I spoke with the consulting neurologist and described my history very thoroughly, convincing him that I needed an MRI.  I let him know that this pain was unlike any other migraine in the past, and that I was having visual changes days prior to this pain.  Physicians are taught in medical school that a good clinical history goes a long way.  I made sure I didn’t miss a detail.

The neurologist ordered the MRI with confidence that it would likely be normal.  I was wheeled down to radiology relatively quickly (that almost never happens).  As a physician, I’ve ordered MRI’s before and have had to sedate patients because of the claustrophobic feeling in the machine.  Knowing this, I immediately closed my eyes and hoped the 25 minutes went by quickly.  I wasn’t far along enough in my pregnancy that laying flat on my back was too uncomfortable.

After the MRI, I was taken back to my room. I fell asleep again, because that’s all I could do.  I convinced myself that I was in the middle of a nightmare and that I was about to wake-up. But this nightmare never ended – this was real.

I can’t remember how much time passed, but as I awoke, I heard my mom’s voice, “They saw blood on the MRI.”  Wondering if I heard my mom correctly, I sat up and said, “Wait, what?” I honestly didn’t know if I heard my mom correctly, and I was in a sudden state of disbelief.  I’ve ordered a number of MRI’s for my patients,and I rarely receive positive findings on them.  How was this possible?  I was 31 years old. “We” don’t stroke, or we aren’t supposed to. And if we do, something really bad makes it happen.

On top of this, I was 9 weeks from bringing my first child into the world. I couldn’t comprehend that I had blood in my head.  How was it possible that I had a stroke?  It didn’t make sense.  And if I had a stroke, why didn’t I have any noticeable deficits?  Why was my neurological exam completely normal?  Why?  Hours later, I met my OB doctor, the neurologist, and the neurosurgeon together.  The neurosurgeon told me that I’ve had a right insular stroke, and that this was so close to my optic radiations that I could possibly have permanent visual deficits and that I needed visual field testing to see what the extent of the damage was.  I didn’t notice any obvious damage.  He also told me there’s a good amount of swelling around the bleed and that my brain is slightly pushed because of the swelling (called mass effect).

What he told me next is that because I had a non-contrast MRI scan, he couldn’t definitively identify if the underlying etiology was related to a tumor, an aneurysm, a type of malformation, or something else.  The only way to know was to inject me with the contrast dye, thereby putting my baby at significant risk.  We elected not to pursue this route to protect my baby.  As a result, I had to process the fact that my brain just bled and that I couldn’t begin the process of finding out what caused the bleed until my baby was delivered.

Every possible procedure going forward posed is a risk to my unborn child, my poor innocent son. But at the same time, we needed to know what caused my stroke so that we could bring him into this world safely.  Would I deliver early?  Would I have a C-section to prevent the possible consequences that labor may have on the risk or re-bleeding again?  I didn’t know if I would survive the delivery.

All I hoped was that my son would make it into the world safely.  I felt so selfish that I could possibly leave a child mother-less in the world.  What if I died and left my husband with heartache and pain?  I did not want to leave my family behind.

So after many discussions, we decided to wait to do anything about my brain bleed.  Just wait.  It was torture. The thought of the unknown tortured me every living second.

Later on, several neurologists, neurosurgeons, and neuroradiologists reviewed my preliminary imaging –  they identified an arteriovenous malformation, as best they could with what they had, but couldn’t rule out that it was a tumor.  Without additional diagnostic exams, they couldn’t know 100% what they were dealing with.  Since AVMs are congenital, I come to realize I’ve had this malformation since I was born.  Who knew I’d been walking around with a ticking time bomb in my head?  I’ve skydived, been sucked under waves, jumped off waterfalls,and zip-lined. At any time I could have bled, seized, and ceased to exist had it happened during any one of these activities.  I then realized that pregnancy is likely a risk factor for an AVM rupture.

The irony was that I had been studying for the neurology portion of my board exam for the two months prior, diligently going through vignettes and questions, only to become yet another patient in just a vignette.  A vignette that if given answer choices a-d would be debated over and potentially thrown out by the boards because there is no straightforward answer.  Cue Alanis Morissette- Ironic.  There was no perfect answer, so I continued to wait.

I hoped I could carry my little dude to full-term.  I had to get a repeat MRI within a few weeks and hoped it would give more information on the next step.  I likely needed surgery but not completely sure when.  I asked myself, am I really going to have brain surgery at the same time I’m trying to navigate this new role as a mom?  The worries surrounding being sleepless, breastfeeding, and just getting this mother thing down have been trumped by the worries of survival, worries of re-bleeding, worries about having seizures, worries about complications of getting surgery and whatever possible deficits I could have.  So, I waited, and the waiting was horrible.

After my discharge from the hospital, I transitioned all of my care to a different area, where I would be closer to where my mother worked.  I also had to take a medical leave from my fellowship.  My husband and I eventually moved in with my parents to be closer to the hospital.  I ultimately transitioned to a new high risk OB, a neurologist, and a neurosurgeon in that area. They were great and made me feel more calm. I kept negotiating with my OB to push my delivery as far back as she would safely let me because I wanted my son to be term.  At one point, the OB’s fellow suggested I go on an anti-epileptic medication called Keppra, which I was terrified about.  I knew what KEPPRAGE was and I had to balance the risk of what a seizure could do to my unborn child vs what side effects of the medication could do to him and to me.  Ultimately after consulting with my neurologist and neurosurgeon, we determined that it would be safe to decline the Keppra.  My son was delivered around 38 weeks via c-section for safety reasons due to risk of re-bleeding if having a vagnal delivery.

When my son was born,  I had to learn to be a new mom while still trying to figure out what the heck was in my brain and how we would deal with it longer term. However, the anxiety of not knowing was trumped by my sleepless mom mode, and I truly believe it was the greatest distraction I could have had. I had to re-focus on my son, breastfeeding/pumping and making sure he was growing and healthy.  Without knowing, I went into full “I had no choice” mode. Looking back, I now realize that I was playing with fire, as I still had a fresh bleed and a risk of re- rupture. I thought to myself, “Can lightning really strike me twice that quick?”  I had my angiogram a few weeks after my son was born, and it finally confirmed that I had an AVM.

I decided to spend five months bonding with my son before having the surgery to remove my AVM, which was the longest that my neurosurgeon felt safe letting me wait.  I had the help of both sides of the family, especially my mom and MIL, and I had relatives close by. I had some mom friends but still I felt pretty alone because NO ONE had this experience.  My cousin told me about her friend’s husband who had an emergency AVM surgery after a rupture, and I asked him to come over the week before my surgery because I wanted to talk to someone who knew what I may be going through.  I found that helpful, and it also calmed my nerves.  About one week before my surgery I pumped a ton of milk for my son because I had to stop breastfeeding, and I wanted him to at least have breast milk for almost 6 months.

The days leading up to the surgery was a range of emotions, everything between tears, breakdowns, and motivational feelings.  I think I played countless songs in order to “pump” me up before my surgery.  The day of my surgery, both sides of my family came to the hospital.  What I didn’t realize until after was that the surgery would last 12 hours!  The benefit of going under is that that time passes without you knowing but the agony to family is real.  I can’t imagine what my family was thinking.  I was in the hospital for about a week after my surgery.  During that time my family took shifts between staying with me in the hospital and then staying with my son at home.  Honestly I was so out of it I had no idea what the schedule was; they basically figured it out.  I remember the first few days I had a lot of pain behind my eye, and I remember constantly asking the nurse for an ice pack.  When I was able to walk to the restroom, I looked in the mirror and my face was completely puffy (probably from the surgery and the steroids).  I tried to be lighthearted about it and kept joking that my face looked like a “pancake” to ease my own anxiety with my appearance. I even began quizzing the residents who would round on me just so I knew my mind was still sharp.

After leaving the hospital, I stayed in my parents’ home with my husband and son, and my mom and husband took a month off to take care of me.  I was mostly tired, and they both forced me to go on walks after a week or two.  Whatever activity wasn’t physically taxing I spent with my son, but that month is such a blur still because of all the meds I was taking (pain meds, steroids, sodium, Keppra).  While I initially had mild visual deficits which weren’t noticeable to me, I eventually returned back to have an examination and my visual deficits completely resolved.  Finally it was my sister in law’s son’s birthday at the end of the month and I put on something other than sweats, finally washed my hair and went to the birthday party.  That was probably the first day I felt normal (I think I put on eyeliner).

I eventually went back to complete my fellowship and took my board exam (and passed!). After my stroke, I considered dropping out of fellowship, but I knew completing my fellowship ultimately was a testament to how far I had come from that initial stroke and had to prove to myself that I could overcome the adversity from a year prior.  Ultimately, I went on to graduate fellowship and became double board-certified.

As time went on, I started considering getting pregnant again.  I called this my “redemption” pregnancy or it was supposed to be my redemption pregnancy.  I didn’t have the fear of stroke, and I felt like no matter what happened, I’d be able to handle it.  I felt that I had already hit rock bottom with my first  pregnancy and that I could handle the “regular ups and downs” of my second pregnancy.   I threw up until 20+ weeks and even some in my last semester. I had to go to the emergency room once to get fluids.  I got to 41 weeks and was miserable.  I was pushing to have a vaginal birth after C section, but I couldn’t wait it out longer so I had a repeat C section (which was fine, it’s just a longer recovery).  Still, it felt like what was supposed to happen during pregnancy- vomiting and all those joys.  I was definitely more calm during the second pregnancy (when not throwing up).  I wore more maternity dresses the second time around.  I was thankful I wasn’t going to 1000 doctor’s appointments every week and just my OB.  I felt like a regular ole pregnant woman.

I haven’t talked to my son yet about the surgery since he’s only 3.5, but I plan on doing this some day when he’s slightly older.  He’s the real miracle.  He patiently stayed in the womb while I was going through my brain bleed.

If a patient or another mom went through something similar, I would tell them there is definitely hope and that you can still live a valuable and productive life through a traumatic pregnancy like a brain bleed.  It’s isolating, but there’s support and people who want to understand.  I’d offer that it’s okay to ask people specifically how you want them to help you, because it’s hard for people to know how to help in these situations.  Also, science is getting better, and we know more than we did 50 years ago.  It’s completely unfair to be pregnant, have a stroke, and a brain surgery, but it might be the greatest adversity that will shape your life for the better.

Click the photo to learn more about Nisha Ramsinghani.