Apologies for the radio silence. Things have been a bit hectic and it took a while to get my thoughts in order. I thought it might be an idea to get a little bit of the backstory written today. The problem being once I started I couldn’t really stop. So for the random ramblings of the day:
I have a severely dysfunctional immune system; genetically programmed to malfunction. In the past six years it cost me my sight for two years, robbed me of the ability to walk for nearly a year and has landed me in hospital and in the ICU more times than anyone should have to live through in an entire lifetime. My father also had a severely dysfunctional immune system. It cost him his life. He got ill shortly after my second birthday and was gone less than a month after I turned seven. He fought his illness for five years. I have been doing the same for the last six.
Having a genetically based illness is a weird thing. I know there is absolutely nothing I could have done differently at any point in my life to keep myself from getting ill. My medical fate was sealed at conception. It was never a matter of if, but when.
My poor mum still agonizes thinking of the year I got ill. What if I hadn’t rented that flat with no heating? What if she’d taught me how to budget better and I ate better quality foods that year? What if I my stress levels that year were lower? What if… What if…
There are no answers to any of those questions. Doctors have told us time and time again that my immune system cannot function in a healthy fashion; the information that would normally allow it to is just not in my genes. In fact medical professionals have difficulty believing I was healthy for as long as I was. I, on the other hand, am simply grateful that I got to experience twenty years of health and strength whatever the reason may have been.
A few years ago, in an attempt to stop the progression of my disorder and halt organ destruction I began monthly treatments with intravenous chemotherapeutic agents. I had a long cycle of chemo at very high doses. It failed to do anything for my health, other than perhaps make me weaker, but it wreaked havoc on my fertility. My life was at stake at the time so no one was really counting ovaries and doing FSH measurements, but I noticed subtle differences from then on. My periods became irregular, some months they were just absent. The hormonal acne I had hated until that moment and that appeared every month was suddenly gone. I knew my fertility had been affected to a degree; in fact I had been warned it would be before I started treatment. I refused to get fertility tests at the time.Denial is a powerful thing.
Last year, my period became more irregular than ever. My health was more stable, so I went to a gynecologist to try and figure out what was going on. My FSH was high, my ovarian reserve low and whatever ovaries I did have were polycystic. I was in early menopause. I expected the results, but they were surprisingly painful. I could have children, the specialist said. Only I’d need to take medications for ovarian induction, medications I couldn’t take because of my immune system, and then use a surrogate. I thought about it some then thought about it some more. And then I picked up a foster parent application. Fertility treatments, as life altering as they may be for some people, were just not for me.
In the middle of all this I had been having an on and off fling with a man. We were always very careful and pregnancy, children and any sort of a future were not part of the equation for us. That is, until my period was a couple of weeks late, my appetite turned voracious and I was nauseous all day without my usual immune mediated hemolysis! I don’t think I’ll ever know exactly why, I was absolutely sure by that point I could never have children of my own, but I got a pregnancy test. It was positive.
I immediately called the fertility specialist I’d seen earlier in the year. He paused when I told him about the test and then started asking questions to confirm he remembered my medical history right. Yes I did have polycystic ovaries. Yes I’d had chemo. Yes I wasn’t ovulating. Yes my FSH and ovarian reserve were not good. He paused again and exclaimed: “Congratulations!!”
Due to the severity of my condition and its predominantly genetic nature, I’ve had to grapple with a myriad of practical and ethical issues these past few months. I am to my very core, anti-abortion. Please don’t get me wrong. I don’t mean to imply that I judge anyone who exercises their legal choice to terminate a pregnancy or that I think doing so is somehow inherently wrong or unethical. It’s just not a choice I’ve ever been comfortable with, for myself.
Yet after my first appointment with an army of medical specialists meant to help the baby and me get through this in the best possible shape, I found myself in a deep state of despair. My anticonvulsants put the baby at higher risk for neural tube defects like spina bifida or anencephaly. My immune system puts her at risk for heart block in utero, which means she could need a pacemaker shortly after birth. My genes also mean there is a 15-20% chance of her having a similarly defective immune system. My propensity for clots translates to a higher risk of premature birth, of preeclampsia, of HELLP syndrome, of a low birth weight and intrauterine demise due to placental clotting.
I’ve spent the past few months actively trying to absorb this information and to come to a decision that would be right for me and for this child. Making decisions has always been my forte, but this time I was stumped. As much as I hate to admit it, my mother was right! Making a decision for someone else’s life is nearly impossible. I only had my ethical compass as a guide and I’ll be the first to admit that is deeply flawed and subjective at best.
Could I handle having a baby that was ill? I’m sure I could. Could I handle having a child that was ill because of me? I’d like to think I’m in a better position than most since I have an intrinsic understanding of trying to live a normal life and being ill. What about the very real possibility of something happening to me in childbirth or shortly after? I had serious conversations with the baby’s father and with my mother. We agreed my mother would look after the baby full time if I were gone. If something happens to her as well two people who have been close family friends for years, are more than willing and capable to raise the baby. See, I can be very logical and prepare for all eventualities on a practical level.
Throughout all this one question haunted me. What if the baby has the same immune defects I have, that my father had? What if she has a similar disease? What if I don’t die, but live to watch my child suffer from a disorder like mine, a disease I wouldn’t wish on my worst enemy?
Emotionally I’m still trying to find an answer to that question that can offer some sort of relief and comfort. In my darkest hours, I have at times wished I were dead. I have yearned for the emotional and physical pain to stop, for the physical deterioration to go away. I have cried for my lost health, for the life I had imagined and that will never be. I have lived through the depths of despair and come out the other side and though I would hate for any loved one of mine to have to go through the same ordeal, I have come to the conclusion that I do not believe the possibility of despair and suffering and death and pain are reasons not to live. Or to put it slightly differently, in all the times I wished I were dead I have never once wished I had never been born.
I can definitely understand how someone, when faced with the gruesome reality of living with a child with an incurable disease could seriously consider the possibility and decide not to go down that route. People have a right to whatever decision they believe to be correct for them and their family. As for me, I am most thankful that when my mother was pregnant she had no way of knowing I would be ill. I truly do not know what choice she would have made had she known. I think she doesn’t know either. By the time my mum found out, she wasn’t living with the idea of a child with severe immune issues and antiphospholipid syndrome. She was living with her daughter, Zoe, who happened to have severe immune issues and antiphospholipid syndrome and that is a very different thing indeed.
These past few months I refused to prepare for the baby. I kept telling myself it was too early, she was too young, too fragile. I have seen first hand how fragile life can be these past few years. Regardless I found myself clinging to the notion that the baby would stop being so fragile when we got to x number of months. I eventually came to my senses. We are all fragile, every single day of our lives… A few days ago I bought stencil letters for the nursery. I spent hours putting them up and clearing the space. I also got a very tiny onesie and hid it in my closet amongst my clothes.
My family members believe one shouldn’t prepare for a baby’s arrival, in case something goes wrong. They think coming home from the hospital to a complete nursery without a baby can only add to the pain of one’s loss. I don’t know if my baby or me will be ok in the next few days or months. The only thing I know is that we are both ok today. And that is huge! This morning as I was picking out the day’s clothes, I glimpsed at that onesie and a goofy smile stayed on my face for hours. Like everyone else, I can only hope about tomorrow, but a good today is incredible in and of itself.