The last couple of weeks have been full of bad news.
I’ve written about it in this blog before, but when I was 6 months pregnant, my daughter, Mackenzie, was born sleeping after a heart-wrenching few months of uncertainty and desperate hope. There were so many things ‘wrong’ with her little body; she had severe hypoplastic left heart syndrome (essentially, only half a heart), her heart was on the wrong side of her chest (dextrocardia), her lungs weren’t developing, and her intestines and bowels were growing outside of her body. I was told there was no way she would have ever survived even if my body had carried her to term. The most difficult thing was that they didn’t know what caused all of her ‘abnormalities.’ There was no obvious cause and there were no answers. Nothing. When I delivered Mackenzie, I lost 4L of blood and I almost died. I woke up in the ICU the next day. I was so confused and empty. Mackenzie was outside of my body and she was dead, but I hadn’t yet seen her. I’d felt her inside of me; in the weeks before she had died, she had started kicking me. It felt like little butterflies inside my stomach. When I finally held her, almost 24 hours after she had been born, I knew that I had found my purpose in life. I mean, I worked with children as a speech pathologist, I had a niece who I was incredibly close to, and I’d always known it was something I wanted, but it wasn’t until I cradled her in my arms that I realised just how important family was to me. I was meant to be a mother.
Several days later, I went home without my daughter. She burned in a pile of dead babies and I was handed her ashes in a tiny pink and white box, embellished with a delicate butterfly. I was more than a little lost after losing Mackenzie. It’s hard to explain this type of grief to others, because even though she’d never been alive in the true sense of the word, she’d been so alive to me. I was a mother, I am a mother, but I have no living child. Mackenzie changed me. I knew I wanted more children but after her death, I wasn’t ready to start trying again straight away. It had been hard on me physically and emotionally, and I needed time. So, I went back to work and I travelled. In mid-2015, I was overseas in the US when I became incredibly unwell; I was rushed back home to Australia and spent 6 weeks in hospital. I had apparently contracted glandular fever, and given my pre-existing autoimmune conditions, it sent my body haywire. My liver and spleen were incredibly swollen. I developed severe, acute autonomic neuropathy. I couldn’t digest food properly and lost 15kg in less than two months. I spent the next 18 months almost completely bedbound, because any time I tried to be upright, my heart rate would immediately skyrocket to 200bpm and I would collapse within 30 seconds. I would lie flat on my back for 22-23 hours a day. The rest of the time, I would sit in a wheelchair (one that could tilt back), or I would stumble a few metres, mostly just for the important things like the bathroom or meals. I spent most of my time staring at the ceiling, trying to occupy my mind and strengthen my body little by little. I wrote, I read, and I rested. I rested a lot. I had physiotherapy every day, working on recumbent exercises to maintain some of my muscle strength in my legs and improve the blood flow in my feet and legs so that I could tolerate being upright for longer.
I didn’t know if I would ever be able to work again. I didn’t know if I would ever have a family or travel or do any of the things that other 26 and 27-year-olds were doing. But I persisted. I persisted, because I have never been someone to give up. Slowly, excruciatingly slowly, I became stronger. I could stay upright for a little longer. I hadn’t worked in 18 months, but I started volunteering for one hour a week at a local primary school, running a speech pathology group for children. In March 2017, I officially went back to work. I started slowly and built it up. My health has never been as good as it was prior to 2015, but it’s been good enough. I’ve been able to work, and run my own speech pathology business, and I’ve been able to socialise and do some more exercise. As things stabilised, I began thinking about my future again. For so long, I’d be in survival mode, living life day by day without any capacity to think beyond the 4 walls of my bedroom. But as my health improved, naturally I began thinking about what I wanted from life. And every time, I came back to the same thing. Children and a family of my own.
At the beginning of 2019, my partner and I decided we were ready to try again.
We went back to the hospital where I lost my daughter, Mackenzie, in 2019. We saw the Maternal Foetal Medicine team. Although my first pregnancy hadn’t ended well, they felt that I should be able to fall pregnant and carry a pregnancy to term, resulting in a healthy child. With their permission, I weaned off some of my medications in preparation for pregnancy. My health remained relatively stable. I went on an insulin pump and a Continuous Glucose Monitor to ensure my diabetes control was optimal. Then we saw the Genetics team. They enrolled us in a clinical trial for preconception genetic testing (PGT), as new tests had become available since Mackenzie’s death and everyone wanted to ensure there was nothing we were missing. They reassured me it was highly unlikely, and we all thought it would provide me with some comfort and reassurance after the trauma of my first pregnancy. The PGT itself was simple; my partner and I had 2 vials of blood taken in March 2019. They told us the results wouldn’t take long, but unfortunately, things went wrong with the testing process and months passed without news. We thought no news was good news, and although we’d tried to wait for the results, it had been several months, so my partner and I officially started trying to conceive in August 2019.
We received a call from the Genetics team literally a week after we made the decision to try and conceive. We were told that the PGT found something. I was informed that I am a carrier for an X-linked genetic condition. Most X-linked genetic conditions manifest in males, as females have two X chromosomes, and therefore having only one affected X chromosome would be enough to make them a carrier, but not actually manifest the condition. I was told that if I had a son, there would be a 50% chance he would inherit the condition. This condition, although not terminal, would cause my son to progressively lose his vision throughout his childhood due to splitting and tearing of his retina. He might end up legally blind before he was a teenager. This visual loss could not be corrected or assisted with glasses. We were told that they could not predict how severely the condition would manifest in our child until it actually happened.
It was another blow, another piece of upsetting news in what felt like an endless cascade of bad luck. My partner and I met with the Genetics team and they gave us some options for moving forward. We could try to conceive naturally as planned. If we did, there was a 25% chance we would have an affected child; a 25% chance we would have a female carrier and a 50% chance our child would not be affected by the condition at all. Otherwise, we were told that we could go through IVF and have pre-implantation genetic testing to ensure that only healthy embryos were implanted.
At first, we wanted to continue trying naturally, because I knew it was possible. I mean, I’d fallen pregnant before, 5 years ago, and I could technically carry a child. Right? Either way, whether the genetic testing had shown anything or not, it would have felt like a gamble because I’d been through it already with Mackenzie. It had been traumatic, but I was ready to take that risk to give my daughter a sibling. I knew that whatever happened, happened, and I would be okay. But then my long-term doctor advised that we undergo fertility testing, ‘just in case’, because I was now 30 and I have multiple health conditions affecting my hormone-producing organs, plus I’d been through a traumatic birth that resulted in severe haemorrhaging in 2014. Given I had so many obstacles in my way already, she thought it was a good idea to do this testing before we decided what we’d do next. She said it was “just to make sure” there was nothing else standing in our way.
Can you guess where this is going?
So, I had a pelvic ultrasound to look at my Antral Follicular Count (AFC). This looks at how many follicles are present in the ovaries and can be used to estimate how many eggs a female has left. I lay on that plastic chair in that familiar, haunting dark room as they inserted a vaginal ultrasound probe inside of me. I apparently have a good uterus and flexible ovaries. My right ovary “wasn’t doing much”. They only counted two follicles on that side. My left ovary had 7 follicles. 9 follicles in total at 30 years old. I asked if this was ‘normal’ or ‘okay’, and they told me that it was a ‘bit less than they’d expect for someone my age’. That same day, I received a call from the GP; she’d done a blood test on day 3 of my cycle to check my hormones, and she wanted me to come in to discuss the results.
After I left the ultrasound clinic, I sat inside my parked car and I cried. I cried for myself, for Mackenzie, for all the children I may never have. Eventually, I wiped away my tears, reminded myself that I didn’t know enough yet so I needed to be patient, and went into work.
I went in to see the GP the next day. She was running over an hour late, so I sat in that stale old waiting room for over an hour, watching people tiredly traipse in and out until, eventually, she called my name. She apologised for the wait and said that she had experienced a day full of delivering bad news. I sat down and I said, “don’t worry, I already know that it’s bad news”. She looked at me with tears in her eyes. “I’m so sorry, but it’s not great.”
My AMH is low. Not drastically low, but low enough. That coupled with my low AFC suggest that I’m in premature ovarian failure. It’s likely autoimmune. Another one. The disease that completes the autoimmune polyglandular set. I’m going to be in menopause long before 40. When exactly? We don’t know. Why? Because my body is hell bent on destroying itself and it doesn’t matter what I do.
I am being referred to a fertility specialist. The one light in this endlessly dark tunnel is that they managed to squeeze me in for an initial appointment with the specialist next Thursday. Only 9 days instead of 6 months. Hopefully then I will have more information about what this means for me, for my partner, and for our future family.
I feel disturbingly fatalistic about it all. My chances of bearing my own, healthy children are continually narrowing, and it hurts so much that I can’t feel anything about it.
We’ve dipped our toes into the fertility pool, but we are yet to dive right in. I feel a little underwhelmed by it all to be honest. It feels as though we’re perched right on the edge of something completely transformative but we’ve been stuck here in this same spot for several weeks now. Waiting.
Illuminating Kate 