I Had A High-Risk Pregnancy -- And No One Prepared Me for the Aftermath

I have multiple chronic illnesses: Central Nervous System Lupus, Ehlers-Danlos Syndrome Type III Hypermobility, scoliosis and mitral valve prolapse.

I’ve always been hardheaded when it comes to the limitations doctors put on my body. Maybe it’s because I can’t separate my body from me -- they’re one and the same. So if you tell me that I shouldn’t perform a strenuous activity, all I’m hearing is that you think I’m weak.

I have multiple chronic illnesses: Central Nervous System Lupus, Ehlers-Danlos Syndrome Type III Hypermobility, scoliosis, mitral valve prolapse, and there’s probably another illness that one of my first conditions has caused me to forget. In reality, I know all too well what I can and can’t do. But I’ve tried to maintain a certain sense of self-awareness in my ongoing attempt to trick the world into believing I’m a functioning adult.

But all of that changed when I found out I was pregnant.

I couldn’t be the same stubborn 22 year old who managed to graduate on time despite having two debilitating grand mal seizures. I was responsible for my body – now more than ever – because someone else was depending on my body, too.

After the first prenatal visit, I was overwhelmed by all of the pamphlets and restrictions given to me. For the first time in my adult life I actually had to get a day planner to keep track of all the appointments. There was my primary OB/GYN, the Maternal Fetal Medicine Specialist (who was two hours away), a gastroenterologist, a neurologist, a cardiologist, a rheumatologist, and an orthopedic surgeon on stand-by. What had I gotten myself into?

It was scary. Every day in a high-risk pregnancy it seems like you’re holding your breath, desperately hoping to make it to each important milestone. First you hope for a strong heartbeat, then you hope to make it past the “miscarriage window,” and each week that passes without premature labor or complications is a tiny victory.

Yet with each accomplishment, a setback was sure to follow not far behind. My first scare was Lupus-related. My doctor told me all about the “Rule of Thirds” which meant that for all pregnant women with Lupus, one third will see a decrease in symptoms, one third will see no change, and one third will see an increase. And because I’m super lucky, I experienced an intense flare-up during my first trimester. Not only was there the hyperemesis gravidarum (severe morning sickness) which caused to me lose weight, but I woke up one day with a huge rash all over my stomach, chest, and back.

As I was nearing the finish line, a strange thing began to happen. I started to feel not just comfortable with, but proud of, my body. For once it was actually doing something right! I began to love watching my stomach grow and cherished feeling the baby move around in its tiny home.

That same hardheaded attitude transformed into a fierce determination to keep that home, my body, safe for both of us. So after rib and hip dislocations, a minor pelvic floor tear, a fall at work, and multiple trips to the ER, I was put on bed rest at month seven.

Again, I felt an odd sense of confidence in myself. I had read all the right books, followed my doctors’ instructions, ate healthy (even if I puked most of it back up), and even made a cute, Pinterest-worthy quilt for the nursery. It was VIP treatment during the last few weeks of the pregnancy.

Being high risk meant OB/GYN visits occurred two to four times a week and my bright red folder meant I got bumped to the front of the line. Family, friends, co-workers, and even frenemies showered me with compliments on how I strong I was and what great shape I was in. Sincere or not, I soaked it all up not knowing it would probably be the last time I would feel so wonderfully connected to my body.

Then the big day came. I had a C-section for medical reasons and it wasn’t exactly the best experience. Besides the veins the nurse blew in both my wrists, I was having a reaction to the spinal block and was throwing up during the entire surgery.

Being paralyzed from your ribs down, strapped to a table in a freezing room and only being able to vomit by turning your head to the side and praying not to choke wasn’t covered in ANY of the pregnancy books I had. That should have been my first clue that I was embarrassingly underprepared for what was still to come.

I was taken to recovery and decided to quietly sneak a peek at my newly vacant stomach. I wasn’t expecting to see a six-pack, but good God, I looked like I was still five months pregnant! I quickly put the covers back down and tried not to think about it. But I couldn’t help it.

Of course I was mostly focused on rejoicing in the arrival of my new baby, but a tiny part of me was grieving -- grieving the loss of a body with purpose. And while I held my son for the first time, careful not to put any pressure on the incision, I pushed every freshly-opened nerve of self-loathing to the back of my mind with all my might and instead got lost in his eyes.

I was elated to be a mother and excited for all of the special moments that would follow. Yet I still felt no one could understand the disconnect I was feeling within my own body.

As soon as I mentioned anything about it, I was immediately shut down with comments like, “But you’re so tiny!” and “You look great for just having had a baby, though.”

Yes, that’s great, but that wasn’t what I was saying. I was saying this: My body – my flawed, malfunctioning, and ill-constructed body – at long last did a job and did it correctly. But what is it now? I don’t know this body. I don’t know these lumps and scars. Whose soft, malleable stomach is this?

No one prepared me for this and no one was to blame either.

The next blow to my shaky self-esteem was when I found out from my doctor that I was unable to breastfeed due to my connective tissue disorder. I felt like I was flying in reverse, away from the body I thought I could trust. It survived pregnancy and produced a healthy child. Why was it failing?

My body had just been an illusion of function, I told myself, a castle made out of sand that crumbled and no longer held purpose. It couldn’t even sustain the life it helped create.

Logically, I knew that my baby would be fine and so would I, but reason and facts were no match to my hormone-driven, sleep-deprived brain. I kept taking things one day at a time, just like during the high-risk pregnancy, cautiously waiting for things to progress. Except there was no gradual “journey back to me,” or anything like that. Instead, it was one clear moment of raw vulnerability that snapped me awake.

It was in the early hours of the morning, still dark out, and I had my son next to me in bed. I was attempting to coax him back to sleep after a particularly loud, heavy Florida thunderstorm had rolled in.

A sudden clap of lightning startled him and he instantly grabbed and clung to my loose stomach where he nuzzled in and fell asleep. I hadn’t allowed myself or anyone to get so close, let alone touch, my stomach in months. But when his sweet, pudgy little fingers dug into my skin for comfort I finally felt my body was capable of being a home again -- for both of us.