My Life of Love – a journey through TFMR

Our journey to have a family is a long and complicated story filled with sadness, love and determination. Our story is more than can be described here but it has sadly included two TFMRs – Termination for Medical Reasons.

Our first TFMR occurred in January 2019. At twelve weeks and five days into our pregnancy we had a CVS. We knew throughout this pregnancy that we would need to test this baby for a genetic condition we knew we both carried and could pass on to our children. We knew this because it had taken away the life of our daughter Mackenzie when she was just seven months old. The condition was terminal for all who were affected with it and had no cure meaning we could never give her the life she deserved. We knew from then on having a family would be difficult for us. We knew we would need to be strong in order to get our dream. A dream that comes so easily for others.

We went into the Royal Hospital for Women in Randwick, Sydney to have the CVS. We were scared. Not of the procedure but of the results, of losing another child. Before the CVS the doctors performed an ultrasound to check the baby was looking healthy and to see where the placenta was sitting. It was in a good location meaning the CVS could be done through my abdomen.

The doctor numbed the area with a local anaesthetic and using an ultrasound to guide the hollow needle they took a bit of the placenta. I felt pressure when the needle pushed through the muscle but overall, I didn’t feel any pain other than the local anaesthetic. By now I had become so used to needles.

What hurt was the wait.

We were expecting to wait a week or two but after just a few days we received the call to come in for the results. I cannot tell you what it felt like to drive into the hospital for those results. This moment would determine whether we could keep our child. I felt lightheaded, weak, sweating and nauseous.

Eventually our midwife walked us into a room where we met with a doctor. The doctor explained to us that sadly our baby had the same genetic condition our daughter Mackenzie had. Words cannot describe the pain that ripped through our hearts in that moment. They told us that it was another baby girl. Later we would name her Bella.

For us we had already decided that if the baby had the same condition, we would have a TFMR. We had no experience with a TFMR but we had watched our daughter Mackenzie die from the same condition. We knew that there was no cure, we knew what we had to do. Our choice was made out of love. It was our role as parents to protect our child from pain and suffering, even if it meant pain for us. Being a parent is not easy.

After telling the hospital of our decision we had a few days until our procedure. During those days we took our little baby, whilst still safe inside me, on as many adventures as possible to create some small memories. We took her to the park to we had taken Mackenzie, went on road trips, out to dinner and spent time with our family.

Finally, it was the day to say goodbye. We were scared and upset to say the least. We wished we could be anywhere but where we were. We had moments where all we wanted was to have this baby and hold her in our arms but we knew that the happiness that we would feel in that moment and come at the expense of a short life of potential suffering for our baby.

In the day surgery a doctor inserted two tablets inside my cervix to soften it. Over the next couple of hours, I felt cramping and bled a little. Scared my baby was feeling pain I called for the doctor, they explained to me that the baby could not feel pain yet. All that would be felt was a swaying of the baby as my uterus contracted.

After a few hours it was time to go to theatre. My husband kissed me and then my stomach, saying goodbye to the baby we so desperately wanted. I was wheeled into theatre and given a cannula for the anaesthetic that would put both me and my baby to sleep but that only I would wake up from. The staff were so beautiful and kind to me. They knew this baby was loved; they had seen this pain before. As I drifted off to sleep, I held my hand on my stomach and whispered I love you, I love you over and over again.

When I woke up my baby was gone. I felt empty.

Over the coming days I was naturally sad. I cried day after day. I had a little spotting for a couple of days along with some twinges but mostly my body seemed to be recovering quite well. After a few days I crashed emotionally and couldn’t stop crying, around this time my breasts started to leak small droplets of colostrum. This seemed like such a cruel side effect. It was hard to look in the mirror, to see the pregnancy weight I had put on and my bigger breasts. Seeing the remnants of my pregnancy not sure if I wanted them to go away or not.

This was one of the hardest things I had ever done in my life but sadly I knew for us it was something we had to go through in order to have our family. Not everyone’s story is simple.

Almost one year later to the day we found ourselves in the same position. Pregnant once again. This time we had a private obstetrician who we had met along our journey who wanted to help us have our family. At 10 weeks we had the NIPT, this would tell us the risk of the baby having a chromosome condition, although we needed the CVS to show whether our baby had the same genetic condition as Mackenzie and Bella. The NIPT results showed our baby had a high risk for a chromosome condition.

We were absolutely floored. We never expected this. Here we were focused on the genetics of our baby when there was a high risk of something else being wrong, the baby’s chromosomes.

A week, filled with stress, later we were once again having a CVS. Our beautiful baby up on the screen looked perfect to us. But sadly within a few days we were told that whilst the baby didn’t have the genetic condition we were worried about, they had a chromosome condition. We couldn’t believe that this was happening. In shock and devastation, we cried and screamed but we couldn’t change our circumstances. How could this be happening again?

We learnt about the condition and what it would mean for our child’s quality of life. We looked at all the other elements of our life, where we lived, what our finances were like because only one of us would be able to work while the other would have to be a carer for our child and what family we had around which was none meaning we would have to move States to be closer to help.  Once again, we had to make the life changing and desperately unfair decision to have another TFMR.

The TFMR itself was the same, accept our Obstetrician did the procedure. All I remember from being in the theatre was begging the staff to be gentle with me and with my baby.

We found out a week later the baby was a little boy, we named him Leo.

The past three years have been a rollercoaster of love and pain. I never imagined this would be our lives. I have learnt so much about life, about our relationship and about myself. We are so much stronger than we ever think we could be. So many people tell me that they don’t know how we do it or that they don’t think they could have done it, but they are wrong. People can survive so much more than we think.

I know my babies are with me, it just wasn’t the right body for them.

Rachael Casella – Rachael and her husband Jonnny have had a heartbreaking journey, losing their daughter Mackenzie at 7 months old to a rare genetic disorder called Spinal Muscular Atrophy (SMA) type one. Further, their next natural pregnancy resulted in their daughter Bella also having the condition, while most recently, their son Leo was found to have a separate chromosomal issue – both pregnancies resulting in termination. Rachael and Jonny are still desperately trying to conceive a healthy baby while also raising awareness of SMA and campaigning for greater access to genetic testing via their charity Mackenzie’s Mission

You can find Rachael on Instagram @mylifeof_love

 

Rachael’s book Mackenzie’s Mission is due for release in June 2020.

 

 

If you are in need of emotional support and are currently faced with this heartbreaking decision, our resource may help you. The Turmoil of Termination – Pink Elephants Resource

 

 

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