Rachael Casella and her husband Jonny Casella have welcomed three babies into their hearts – Mackenzie, Bella, and Leo. Unfortunately none of whom they can hold in their arms today.
The couple has endured more heartbreak on their journey to start a family than we can even imagine. Yet, through it all, they remain united and hopeful. We are absolutely blown away by their strength, honesty and courage as they come to terms with these devastating losses and work towards ensuring other couples don’t have to endure this type of heartache.
Mackenzie was born in 2017, as new parents Rachael and Jonny watched Mackenzie grow from a teeny newborn into a cheeky infant. However, at 10 weeks old their little girl stopped moving her arms and legs which was the beginning of a very tragic outcome.
Mackenzie was diagnosed with a condition called SMA – Spinal Muscular Atrophy (SMA), a neuromuscular disorder causing the loss of lower motor neurons and progressive muscle-wasting. Unfortunately this ends in a shutdown of the body, leading to an early death. It is the number one genetic killer of babies under two.
Rachael and Jonny were forced to do something no parent should ever have to do – say goodbye to their gorgeous little girl. She was seven months and 11 days old.
I had only experienced [death] when it came to grandparents passing away,” Rachael told 9Honey.
The death of a child blows all expectations of grieving out of the water. Everything I thought I knew, I didn’t.”
After Mackenzie’s death, Rachael and Jonny discovered they were both carriers of SMA. They turned to IVF to have another child, hoping they could screen for SMA in the embryos during the IVF process. After five rounds of IVF, they hadn’t conceived so doctors suggested they take a break.
They then fell pregnant naturally which meant there was a chance this baby would have SMA as well. Tests at 12 weeks confirmed that, yes, she did. They made the decision to terminate the pregnancy and Rachael prepared to say goodbye to another daughter, named Bella.
At the start of 2020, Rachael and Jonny prepared to welcome another child into the world – this time a little boy. But, once again, they were left with heartbreak after discovering this baby also had a chromosome condition. Once again, Rachael would return to the hospital and leave without a baby in her arms.
They named their baby boy Leo.
Her memories live on
Rachael has been through more sadness than we can even imagine. The positive pregnancy tests, the multiple rounds of IVF, the miscarriages and embryos that didn’t stick, the devastating diagnoses of Mackenzie, Bella and Leo, the surgeries, and the sadness of not being able to watch these babies grow up.
Rachael has openly shared her fertility journey on Instagram, documenting the ups and downs of IVF, speaking openly about the surgeries, and sharing beautiful memories of Mackenize along the way. Her openness about the struggle, the sadness and the successes is admirable, to say the least.
She writes in one heartbreaking update,
My little baby girl should be in my arms. She should be safe and warm nestled near my heart.
I should have been able to protect her from this world and its harshness, I should have been able to do so much more.
I should never have watched her last breath, to hear those words from the doctor that she was gone. To have to learn to live without her.
I will always be a mother but I feel like I am stuck in limbo being a mother without a child to hold. I am not a childless person but I have no child in the physical world. So what am I?”
I have been pregnant 6 times in my life with no baby to hold. I don’t believe in religion but I believe there is something after we go. Will I be surrounded by my babies when I die. Do they know how much I love them?
I wish so many things but only one of my wishes matters and it is the one I can never have or fullfill… I love you my sweet princess. Always have, always will.”
‘One and a half embryos left’
Rachael and Jonny are not giving up. They have one and a half embryos left and plan on continuing fertility treatment.
“Some people have asked us why we don’t give up, why do we keep trying? And I think it’s really hard for them to watch us go through so much pain, but we never will.” Rachael says.
“Our fight is far from over but we are one step closer.”
Like most of us, SMA is not something Rachael knew about when she had Mackenzie. She didn’t know she was a carrier and she didn’t know Jonny was either. Although there is a genetic screening test for SMA (plus other genetic conditions), it is currently not offered to expecting parents unless there is a family history of it.
The test is also quite expensive – $385 for a basic genetic test and an additional $800 for a test that screens for 101 genetic conditions.
Since Mackenzie’s death, Rachael and Jonny have set up Mackenzie’s Mission to educate expecting parents and medical professionals on the importance of genetic carrier screening.
You can find out more and follow Racheal’s journey through her Instagram page, My Life of Love.
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