I still struggle to understand how we ended up on this life trajectory. It was just thrust upon us and we now just have to try to catch up with what we have been given.  

We have now completed five rounds of IVF, with nearly all of them failing. Five rounds and only one healthy embryo to show for it, we don’t know if that embryo will even become a baby for us. We felt so lost and disheartened.

Following those five rounds we decided to take a break to give my body and mind a chance to rest, as well as save money in order to go again. We believed that my stress levels of losing Mackenzie were affecting my response to IVF. Walking away and taking a break from IVF was a hard decision, especially as I saw my 35th birthday looming ahead of me. But Jonny and I made the decision to try naturally. We figured that we had no fertility issues so getting pregnant shouldn’t take too long, the hard part would be waiting to see if the baby had SMA.

For us, for a natural pregnancy the process would be a different kind of stress than IVF. We would have to first make it through the first three months, the dreaded miscarriage risk zone. Then push through until twelve weeks when we would have a Chorionic Villus Sampling (CVS), which is a where an ultrasound guides a needle through my stomach and takes a sample of the baby’s placenta. The placenta could then be tested to see if the baby was affected by SMA or had chromosome issues. We would then have an anxious wait for two weeks to know if our baby would be healthy or not. There would be a 25% chance they would have SMA and then a normal couple’s chance of having a chromosome disorder.

With all this knowledge we decided to spend four or five months trying naturally before starting IVF again. We had tried IVF now it was time to try naturally.

The first month or two we were unsuccessful. We used ovulation tracking from Genea which really helped us know when exactly I was ovulating. The second month we did actually get a positive but then the next day it was gone.

On the third month, again using tracking, and we got a positive!! I tested for the next seven days and each day we kept getting positive lines, but the lines weren’t getting darker. I had also tried a couple of digital tests which were saying negative. Deep down I knew something didn’t feel right but Jonny was trying to be positive. We had a blood test to check and sadly it came back showing whilst I had been pregnant, I wasn’t anymore. It was a very early miscarried, or a chemical pregnancy.

We tried to look at this like a positive. We had got pregnant so maybe we could again, but I still felt so deflated. What was worse was the timing… the blood test results came three days before the one-year anniversary of Mackenzie’s death. We had thought that maybe this pregnancy was meant to be, that it was poetic that we were having a positive test result just before her anniversary. So, to discover we had lost the baby felt like a kick to the heart.

On our fourth month of trying we knew we were using our last free ovulation tracking with Genea. The timing worked out well as we did the tracking and tried to conceive before we were heading away for a trip. First, we went up to Brisbane and Toowoomba for a friend’s wedding, we then headed to Byron Bay to have some couple time and recreate some memories we had there with Mackenzie. We then flew back down to Sydney for one night before driving to Echuca to spend a few nights on a house boat for one of Jonny’s best friends 40th birthdays.

On the last day in Byron as we drove back to Brisbane, we decided that if we weren’t pregnant this month, we would do another month of trying in November/December, but we would start IVF again in January. Desperate to have a plan in place we called our fertility specialist. Dr Gee was understanding and initially said we could try again in January; however, looking at my cycle she said I would be ovulating over New Year’s when they were closed. So, we had a choice we could start on the next cycle in November, which actually meant starting the medications the next day (so soon!) or we would have to wait until February. Jonny and I looked at each other and said yep let’s do it. Dr Gee asked us to come in to the clinic for a blood test the next day to check my levels and confirm I wasn’t pregnant and to collect my first medication.

The next morning, we woke up early and headed into Genea, then straight away hit the road down to Victoria. As we were crossing the New South Wales and Victoria borders, we got the call from Genea to say that my HCG (pregnancy hormone) level was 4.7, over 5 was considered pregnant. Which meant that I was officially not pregnant again. My heart hurt… I couldn’t take it. I cried a lot that night. But the plan was made that I would begin taking the first hormone.

The next morning, I woke up to this serene picturesque place. Floating on water, the birds chirping and cicadas buzzing but I felt like I had been hit in the head. I was so swollen from crying. I had a pregnancy test in my bag so for some strange reason I took it. Torturing myself I guess. I knew a blood test had said that I wasn’t, but I took one anyone, maybe I had just become a sucker for punishment.

I walked out of the room and made myself a coffee, I came back a few minutes later and took a quick glance at the pregnancy test. It had two lines.

No that couldn’t be right.

I looked again.

Two lines.

My immediate feeling was anger. Enough playing with my emotions. I spun on my heel and went to get Jonny. Once inside the safety of our room I thrust the test at Jonny. He looked down and said, “I knew it”. I said, “how can you have known it, we got a definitive blood test yesterday saying we weren’t”. Jonny just assumed it had been too early. But I was not convinced, a blood test is a thousand times more accurate than a pregnancy test. I had been down this road before, I had got my hopes up, not this time.

My head was spinning.

I called Dr Gee’s office who said that they wanted us to come back in for another blood test, but we weren’t going to able to for another four days. They advised us that the hormone we were taking for IVF would not have a negative effect on a baby if taken for a few days so to continue the hormone in case we still needed to do an IVF cycle.

That afternoon we went into town and I got a digital test. If the last couple of months taught me anything it was that digital tests were more reliable. The next morning, we tried to digital test and up popped a positive result.

We stopped taking the IVF medication that day.

The next few weeks were a blur but a blur that dragged. We kept checking my HCG and it kept rising. We didn’t want to get excited though because we knew there were so many more hurdles. First were we going to miscarry?

We had to then wait the agonising four weeks until we were 8 weeks and 4 days to have our first ultrasound. I was so scared that the baby had passed away and that it was a missed miscarriage meaning I didn’t have any signs. For weeks I was scared every time I woke up and every time I went to the toilet, expecting blood but it didn’t happen.

The initial ultrasound showed a healthy little baby, although there is not too much they can tell at that stage. Bubs was measuring correctly for the gestational age and had a strong heartbeat. We got photos from the hospital like any doting parents but for us we were acutely aware that it may be one of the few times we might be able to see baby. We tried to soak it in but keep an emotional distance.

Bella First Ultrasound.jpg

We were told there was nothing more we could do but go home and wait for another month to have the CVS which would happen at around 12 and a half weeks.

Those few weeks were torture. I had the normal symptoms for a first trimester pregnancy. I was nauseous, was putting on weight and had extreme fatigue. I was struggling to get through each day without falling asleep and was dragging myself around. But of course, I had to act normal because we had decided to only tell our family.

Finally, 12 weeks and 4 days arrived. We woke up in the morning and went to a local café for breakfast, we both mostly sat in silence, sitting in our own heads unsure how to feel. At 10am we arrived at RHW. An hour early but we didn’t know what else to do.

First, we had another meeting with the geneticists to outlay the plan. They would find out when the results would be ready and make an appointment for us to come in. Next, we went into the ultrasound room. There were quite a few people in there, the head midwife, the head of the department who would do the CVS, the sonographer, a midwife who hadn’t seen a CVS before and a medical student. We had said we didn’t mind who was there, it was for training, so it was fine with us.

Bella CVS.png

The sonographer started by taking a look at bubs, straight away he or she was up on the screen bouncing about and showing off. The heartbeat was perfect, and all the measurements looked good. Every time I saw the screen, I felt some relief.

Once they found the position of the placenta, they knew they could do the CVS through my abdomen instead of vaginally. I was relieved. They disinfected my stomach and put some local anaesthetic on the area. Then using the ultrasound, the doctor inserted a large needle into my stomach. She had warned me that the local would help relieve the pain on the skin but I would feel the needle going through my muscle to my placenta. I felt the pressure as the needle moved through me but luckily, I am not scared of needles, all I cared about was staying still. The doctor had also advised me that they would have to make a push and pull motion to suck up a good sample of the placenta, it was an odd feeling but not too painful.

Just like that it was done.

We were told that within 24 hours we would get a call which would tell us the results of the standard NIPY test which would include the gender (if we wanted to know it) and more importantly the diagnostic chromosome result of trisomy 13, 18 and 21. We would then have to wait 10 days to find out the result for SMA and the full chromosome scan.

How were we supposed to get through those 10 days?

We left the hospital full of hope but beyond terrified. We knew we had a 75% chance that this baby would be healthy. There was a 75% chance that we are starting down a path of happiness in life, maybe we would be able to really smile again.

The test took place on a Tuesday around 11am, on Friday at 2pm I received a call from the genetics area of Sydney Children’s Hospital. We were told to come in at 4:45pm to receive the results. Instantly, my heart sank, my stomach began swirling almost throwing up all its contents. After telling Jonny we sat in Mackenzie’s room holding her stuffed toys, wishing to the universe, to the world, to any higher power that was going to listen that this baby be healthy and that when we were coming home we were coming home happy and ready to yell our announcement from the roof tops.

We showered and dressed before laying down in bed holding each other for a minute. This next two hours would change the course of our lives, so much was riding on it and we had no control.

We drove to the Royal Hospital for Women in silence. Both working through our emotions.

On arrival we walked to the Fetal Medicine Unit, most of the lights were off and no patients or staff were around. I put my head in my hands on the desk while we waited. The head midwife arrived saying the Doctor was on the way, I burst into tears, the pressure building up in me.

The midwife left for a minute, returning shorty after with a Doctor next to her. Jonny said he knew the results before the Doctor opened his mouth, it was written on his face. Where as I sat there searching his face for any hope. There was no.

He said he wasn’t really sure how to tell us the answer. Jonny said just like a band aid, be honest.

“It isn’t a good result, your baby has SMA”.

I instantly went numb, all the hope and desperation I had for happiness drained out of my body. In an instant I was told that I would not be able to keep this baby I had been nurturing. I instinctively held my bump feeling like I had failed our baby.


Jonny kept repeating the word “No”… I could see the news jolt through him like an electric shock. I felt like I could see it radiate through his ears and all the way through his body like a poison infecting him.

We asked the Doctor our babies’ gender, we were told it was another beautiful baby girl. A baby girl.. Apparently, every other part of her was perfect. A full chromosome screen came back with nothing but a perfect baby. That news somehow made it worse.

I began crying, the numbness receding and the realisation kicking in. Our midwife Kate sat holding my hand as Jonny rubbed my back. We sat there looking at each other with pain and shock in our eyes. What more could we do? Nothing we could say would change the outcome, we knew from experience that we had to sit in our pain. We had to ride this initial shock, hold each other and come to terms with what has been handed to us. Fighting would do nothing, begging and praying would do nothing.

We were told to come back on Monday morning at 8am to talk to the hospital fellow about where to from here. We knew the weekend would be the longest.

All we could do now was go home and grieve our healthy child. I spent hours touching my belly thinking of our little baby girl.

We decided to name her Bella.

What is Spinal Muscular Atrophy (SMA)?

What is Spinal Muscular Atrophy (SMA)?

Goodbye Bella

Goodbye Bella