My story really starts when I met my husband Heinrich. I was 24 years old and thought I was never going to meet that person that I wanted to spend the rest of my life with. Especially since I had the goals to get married, buy a house and have a child all by the time I was 25 years old. I know now how naïve that was, but a girl had to dream right? I joined eHarmony (a dating site) and went on a number of very terrible dates – I thought the dating pool was filled with guys that wanted to tell me about how much money they had, or wanted open relationships or no relationship at all. The day I decided I was going to cancel my membership I met Heinrich.
Looking at his profile and pictures, I immediately got butterflies. We chatted non-stop for about two weeks and he invited me to a dinner cruise. I arrived at the cruise, saw him and lost my ability to breathe for a second. His first words to me were “My, you are tall” and we went on to have one of the best dates of my life. He was funny, nice and caring – everything I ever wanted in a husband. We continued to date for another month when he popped the question to marry him, I couldn’t say “YES” quick enough and we were married six months later. Little did we know the kind of journey that lay ahead of us.
We always knew we wanted children and talked about having two kids.
We were so excited talking about our future and what it could entail. After about a year, we agreed to start trying for a baby and I came off the pill. I stopped the pill after being on it for quite some time and it was like my body forgot how to work. I only had a period every 90 days that first year and it took at least two years for my cycles to regulate. After about a year of trying and tracking my ovulation we still weren’t pregnant and so we decided to go to the doctor. She recommended we go see a fertility specialist just to check everything was okay. She reassured us we were still young; time was on our side and sometimes these things just take time.
We met with the fertility specialist who gave us a whole bunch of forms and sent us on our way.
We did all the tests (except the HSG test given the cost involved) and was told all the tests came back normal. We decided to keep trying naturally as we really didn’t have the money to spend on fertility treatment as we were still navigating our way through getting out of debt. We continued to try for another year with no luck and our financial situation was in a better place, so we decided to go back to the fertility specialist and re-do the necessary tests including the HSG test.
The HSG test showed an anomaly with my left tube but the specialist said it should be okay.
I left that test not worried at all as I thought maybe there was just a small blockage and that the dye hopefully would have cleared it. When we went back to the clinic, the fertility specialist took one look at the test and told me that something was wrong, and we would have to do a laparoscopy to check my tubes. I woke up from surgery, not knowing what to expect, the fertility specialist came in and said they don’t have good news and that the left tube has hydrosalpinx and had to be removed and the right tube was blocked with scar tissue. His words to me were “if these were the days before IVF you would just be an aunt” which effectively meant there was no chance we would ever conceive naturally.
By this time, it had been four years of trying to conceive, lots of tests, and a lot of heartbreak but we knew we had to push forward with IVF if that was our only chance.
We commenced treatment in 2017 and was administered the medication. I didn’t have any issues with the injections or going to get the blood tests and internal scans – by this stage I was so comfortable with everything given the number of tests and scans I have had to date. Things were tracking as expected, they could tell the follicles were stimulating but they wanted to keep my dosage low as I was at risk of ovarian hyperstimulation syndrome (OHSS) as I had polycystic ovarian syndrome (PCOS) and high egg reserves.
I went in for a routine internal scan to check the follicles and suddenly one follicle was way more progressed than the others, effectively meaning this dominant follicle was taking all the hormones. I got the dreaded call in the afternoon that we could go ahead with the collection, but it would likely mean just a very small number of eggs (could even just be one egg) or we can cancel the round. I was devastated, no one ever mentioned that this could happen so it was the last thing I would have expected to happen and felt like I was not only broken over this outcome but over the last four years of trying and giving it our everything to try to have our family.
We decided mentally we needed to take a break, go on a holiday and try living again and finding the joy and happiness in life and in each other.
A few months rolled by and it was time to go in for a routine pap smear, while I was at the GP I suggested we do some general blood tests and just make sure everything looked okay for when we decided to give IVF another go. The next day I got a call back from the GP and was told to bring someone along with me. I will never forget the words that came out of her mouth “I am going to say some words and they are going to sound scary, we have found in your blood tests that you have Chronic Myeloid Leukaemia”. I don’t think I heard a single word after that. The next few months were a blur of tests, procedures and treatment and essentially told we would have to put our dreams of having a family on hold for at least 4 years as we needed to commence treatment right away given the number of cancer cells in my body.
I was broken. I was completely shattered.
I didn’t know how I was going to move forward or how I was going to find joy again. It was just dark. I knew I had two choices, one – I could be a victim, give up and lose hope or two – I could be a victor, fight and hold onto every single speck of hope that I will beat this and have the family I yearn for. If cancer teaches you anything it is to not to take life for granted and to live each day like it could be your last. Hubby and I started talking about moving countries, we hadn’t been happy in Perth for a while and it was filled with so many hard memories and heartbreak that we wanted a fresh start. In December 2019, we sold everything we had, quit our jobs and took a leap of faith to move to Wellington, New Zealand.
Treatment continued while we settled into our new life.
Found amazing jobs and met incredible friends, everything finally felt like it was falling into place. We felt like this was where we should have been all along and it felt like home more than another house or city ever had. In July 2020, we got a surprise. A miracle we wished for but never expected. A positive pregnancy test. I don’t know how many tests I took but I just did not believe the two lines in front of me. As excited as I was, I was terrified. What about my leukaemia? What about my tube, could this be ectopic? I was told to stop all treatment immediately and come into hospital to confirm the pregnancy and ensure that the sac was where it needed to be. They had to confirm all the details to make the decision to take me off treatment as without treatment my leukaemia would get worse and there is no cure.
The pregnancy was going okay, morning sickness was intense and was put onto nausea tablets but even with that I was vomiting up to 6-7 times a day for the first 15 weeks. Que the second trimester and everything settled, I started to feel good and get my energy back. We found out we were having a little princess and the 20 week scan was positive only a minor issue that I had what is known as a velamentous cord insertion (which essentially means the cord inserts to the edge of the placenta rather than the middle) but was assured that this rarely caused any issues with pregnancy and that they will monitor her very closely so we went in for fortnightly visits and this was planned to continue until her due date in March 2021.
In the meantime, my leukaemia returned in full force and so we had to decide with my haematologist what our best option of treatment is given my medication isn’t safe for pregnancy. There is a different drug which had been used for pregnancy in other patients (called interferon) but the studies were still immature about the long term effects but I didn’t really have a choice as the leukaemia cells can mutate and get really bad quickly so I started treatment with interferon. There were no issues with our baby girl in the next few scans and the specialists were happy with how my treatment was going and her growth rates.
On the 4th of January 2021 at the 29-week mark, I noticed a change. I noticed that she was a bit quieter than usual and that she wasn’t kicking much. I decided to give it a couple of hours as she usually moved more at night anyway. At around 8pm I still hadn’t felt anything, so we decided to go to the hospital and just get everything checked out to make sure she was okay. They put me in a birthing suite and did a scan to check where she was sitting. Immediately I noticed there wasn’t a heartbeat and so another nurse came in and moved the screen away from us and after a minute or so said “I’m so sorry but I can’t find a heartbeat”.
In that moment I felt like my whole life and world came crashing down on me.
We had to do several tests and go through the delivery process which is incredibly difficult and traumatic when you know the outcome and in my case all pain relief had worn off by the time she was born. After she was born, I had one day to make as many memories as I could. Abigail Rose is the most beautiful, precious and perfect baby I had ever seen and immediately knew what people meant when they said the love you feel for your child is a love like no other.
After 2 days in hospital we were given a memory book and discharged. No one should ever have to leave your child at the hospital, it is one of the most heart-breaking moments you could ever experience. You pass all these people that are showing off their newborns to family members or getting ready to leave the hospital with their baby in a car seat and here we are empty handed and knowing our lives will forever be changed. I wish I never had to leave that room. I wish I never had to leave my princess behind. All I wanted was more time with her.
So here we are, fresh in our grief but standing at another crossroad in our lives where again we have the choice to completely shut down or to stand strong and honour her memory.
It was never a choice for me, I knew I now have a calling. A calling to honour her memory. A calling to help other mothers and couples that have experienced the pain and heartbreak of infertility or loss of a child. A calling to show others that you don’t have to hide, you can be brave and own your story. You can speak up and talk about your struggles and there is nothing to be ashamed of.
We made the decision to try again but this time going through IVF given we know in 8 years we only had one conception, so our chances of another natural conception are really low.
We are registered to start in July. In the meantime, we will give ourselves some time to heal both mentally and physically. This time I am not scared, I have a renewed hope and a fresh fight. I am not done yet trying to complete our family. We have the strength, the love and the fight to keep going. Family and friends often tell me that I need to write a book and share my story, but I know my story is nowhere near finished so for now this girl has to keep fighting.