We had just found out our new little baby, Bella, who I was over three months pregnant with had Spinal Muscular Atrophy (SMA) just like her beautiful big sister Mackenzie.
We were told on the Friday and asked to come back on the Monday morning to discuss what our next steps with the pregnancy were. The weekend went slowly, all we could do was sit in our pain. I lay touching my stomach thinking about my baby girl.
When we left the hospital, we were a mess. Doing a now familiar walk of pain back to our car with Jonny and I walking in silence, holding each other up. I cannot express the pain that sat in the air between us as we drove home that day.
When we got home, we knew we had to tell our loved what we were going through. The hardest was telling our families, they knew we were pregnant and had shared the anxious wait with us. Then we had to tell our friends who didn’t even know we were pregnant. This included telling my Instagram family about what was happening. Whilst some might think that seems like an odd thing to share with a group of people, who I mainly don’t know. However, for me it was an extremely important step. I had always chosen to be honest with the people who wanted to follow our journey and who supported us. I had decided at the start that I would not glaze over our pain for fear of making some people feel uncomfortable. This was real life, our lives, and I wanted to share it. I have never felt embarrassed about what we are going through. They were my tribe.
Once again, our tribe gathered around us. All together our family, friends, workmates and Instagram followers jumped up to surround us in love. These thoughts and kindness meant so much to us. Every message, every comment, every gift helped to lift us up. Once again it also highlighted those who were empathetic or mature enough to handle our pain and it is never who you think it will be.
On the Monday morning we got up early and dragged ourselves to the hospital. We weren’t nervous, we had already had our dreams ripped away, now we knew we just had to go through the motions. At the hospital we saw our midwife Kate who took us to meet with one of the hospital Doctors, a Fellow. The Doctor was lovely, she sat with us and asked us how we wished to proceed. She made it clear that they were here to support any decisions we made.
Before Jonny and I decided to try to get pregnant naturally we had sat down and had the hard discussion of what we would do if the baby tested positive with SMA. It was the smart thing to do, we knew that if we weren’t on the same page when the time came it could rip apart our marriage and our family. We both had to be comfortable with our decision. So, months ago, Jonny and I had already made the decision that if we were to get pregnant and the baby tested positive for SMA we would medically interrupt the baby.
I have no doubt that whilst most would understand this decision; some people reading this would feel uncomfortable or even outraged by such a decision. I ask that anyone who feels unsure of such a decision please take a moment to remember what we have lived through and know that until you have been in the situation you can never know what you would do. I can assure you this decision was not one that we took lightly, and we made it being informed on SMA, the future for SMA babies and the available treatments. We made the decision having watched Mackenzie lose her strength, having watched her fight for her life and having held her beautiful little body as she took her last breath. We knew from that day that we would never knowingly give birth to a child who would suffer and definitely pass away. It was a decision we knew was the right one for us, but we hoped that this would never become a reality for us; however, now it was.
Jonny and I advised that we would be having a medical interruption. Every medical professional we spoke to understood and, as much as they are allowed to indicate, agreed with our decision. The Doctor went through the process of medically interrupting the pregnancy. Ultimately, I would be given a general anaesthetic and then have a procedure called a Dilation and Curettage, where they dilate your cervix and carefully and respectfully remove the baby along with the placenta and other pregnancy ‘products’. It sounds horrible and I cried just hearing about it. My baby deserved better than that. Bella was so wanted.
I asked about what happen to our beautiful baby. They said that the baby would only know warmth and love. That as I was having the general anaesthetic, the baby would have it as well. The baby would fall into a deep sleep and then would be gone. Her little precious body would be treated with love, respect and care before being cremated.
I listened through tears and heartbreak as they explained the procedures and the risks. How could we once again be being asked to make such decisions? Whether your child died now, knowing no pain having never held them or kissed them or later when they were in your arms, but they may have spent months or years having suffered? Of course, I wanted to hold my child, of course I wanted to hug her, but I had to put my own needs and wants aside. That is what parenting is, making hard decisions, it was all part and parcel of taking on the responsibility of a parent. I knew that Jonny and I would take on all the pain and grief for our child instead of asking her to.
Having signed the relevant forms we left knowing that we were booked in on the Thursday for the procedure. We had three days left to live with her, three days left to feel her inside me.
On the Monday after the hospital all we could do was sit at home and cry. But once again we pulled ourselves up and realised that our unborn daughter deserved more. So, on Tuesday and Wednesday we took our little girl to some special places that meant a lot to us.
On the Tuesday I took myself to Centennial Park in Sydney, the park that housed all of those precious moments with Mackenzie.
I took my bump, our littlest girl on the same walk around Centennial Park that I had taken Mackenzie on so many times. We stopped by Mackenzie’s celebration step and took photos of my bump and the step. Next, we walked past the spot where as a family we had celebrated Mackenzie’s first birthday without her and then finally we walked past the area where we had celebrated Mackenzie’s life at her farewell party. I sat and had lunch in the park cradling my bump before we went home. I was so special and important that we did that walk together, just us girls.
For the final day we had our little girl Jonny and I took a drive down to the Kangaroo Valley and Berry, this was the same drive we did when I was 36 weeks pregnant with Mackenzie.
That night we held my bump and told her tomorrow she would be with her sister.
The next day we were up at 5:45am to be at the hospital by 6:45am. We drove to the hospital in silence once again, holding hands when we could. At the hospital we checked in and went up to the Day Surgery. The nurse who admitted me looked familiar and we sat trying to figure out where from, it turns out she was the nurse who began Mackenzie’s induction.
Around 7:45am, once I was in a gown and in my hospital bed, a Doctor came around to insert a tablet into my cervix, this was designed to soften my cervix which would help make the procedure easier and safer for me. I was to remain laying down as the tablet began working. After about 30 minutes, I began cramping as my uterus moved, I asked Jonny to get the Doctor, I wanted to know that this process was not being felt by the baby at all, which it wasn’t.
As I lay there, we began having surprise visitors. First the Doctor who delivered Mackenzie via caesarean came to visit us, Dr Giselle Crawford. Oh my gosh were we so happy to see her. We had received a beautiful message from her after Mackenzie died. To get that message meant the world to us. Along our journey we have met some medical professionals who said they had always been unsure whether to contact families after tragedies. I think they were unsure about maintaining a professional distance. But we assure everyone we met that for a family to know that their loved one was thought of by people was the biggest gift you could give someone, especially from someone who was there at such an important time and who has seen so many families. Seeing Giselle was incredible. She spoke about Mackenzie and Mackenzie’s Mission, we also saw tears in her eyes which showed compassion and kindness.
Next up came Gemma, the midwife who looked after us for Mackenzie’s birth. Jonny and I had always loved Gemma, she was just the best! She just felt a part of our journey. She had been there for Mackenzie’s birth, she visited Mackenzie just before she died, and she was booked in to be the midwife for Bella. It was so nice to see her smile. She told us that before she came up to the room her and the other midwives had sung Britney Spears ‘Hit Me Baby One More Time’. We felt so much love.
Then came Ali Gripper, the lovely woman who had done a video on our story for the Royal Hospital for Women Gala and had become a part of the media start up for Mackenzie’s Mission, she is such a divine woman. While Ali sat with us in came Kate and Rebecca who was the genetic counsellor we had been seeing for this pregnancy. We felt supported, loved and hoped Bella felt the love radiating through to her.
Around 10:50am, they came around to say the theatre was ready for me. Jonny and I instantly locked eyes. This was it…
Jonny walked with me as I was rolled in the bed down the corridor, down one level and through the theatre doors. I instantly recognised the area as being the one that I had come to for the D&C I had to have after our miscarriage. It was also the area where I think Mackenzie was born. I was hit with this wall of emotion.
Jonny kissed my stomach and whispered to Bella before kissing me. I watched the electronic doors closed with Jonny peeking through until the very last minute.
As they wheeled me further into the area, I could hear the newborn crying, it must have just been born via a caesarean. One life starts while another life was about to end. How can this world be so cruel? For the millionth time I asked, why us?
As this happened, I was surrounded by nurses and Doctors getting me ready, one asked me to confirm my name as they checked my hospital admissions bands. They asked me to say in my own words what I was there for. I whispered, “I am here to medically interrupt my pregnancy, with a D&C”. With those words spoken out loud I began crying. Crying hard and desperately for my baby. One of the nurses held my hand while another got me tissues.
I was wheeled into the anaesthetic prep room with a box of tissues on my chest as I laid there crying.
The anaesthetist eventually came in and put my cannula in. He told me I was going to start to feel a little tired, I remember asking him to tell everyone to be as gentle as they could with both me and my baby. He assured me he would pass it on. I laid my hand on my belly and said goodbye to Bella, after that I was asleep.
I woke up in recovery. The nurse standing next to me asked me about pain. I responded by asking if they were gentle with Bella? She didn’t seem to know what I was talking about and told me she was giving me some Fentanyl. After that I was asleep again.
Around 2pm, I was wheeled upstairs and instantly saw Jonny who was waiting in the closest area to me that he could. Over the next couple of hours, I slowly recovered. They gave me some more painkillers which helped the pain but caused me to sweat and get dizzy. I had pads underneath me to absorb any bleeding. Around 6:30pm, I was eventually discharged. The nurses and Doctors were so amazing, I am so thankful to them for their care but at the end of the day I was missing my baby.
Over the next few days I tried to rest and let my body recover. It was so hard because my body still felt and looked pregnancy but there was no baby in me. My Bella was gone. All that I could hope was that she was now with her big sister, they had each other. Mackenzie wasn’t by herself.
When I shared on Instagram that we had a medical interruption I received hundreds of messages from people who had gone through the same. Hundreds. But so many of them said they hadn’t told anyone or had told people they had miscarriages. So many of them had a fear of being judged or attacked for making such an impossible decision. I find it so sad that people felt the need to hide such a painful experience, in a moment when they needed such support. But I can tell you the majority of the people who have heard our story have supported us.
There is still kindness, compassion and love in this world.
During our pregnancy I made some video blogs, which I have uploaded to YouTube so you can see how we were during this time: