Nikita Jones

Consumer Representative

My Partner and I have dreamt of starting a family for such a long time, however we, as with so many others out there have struggled with infertility. 

After years of fertility treatment we were overjoyed to fall pregnant with our first daughter Lilly. Unfortunately, this joy turned to shock and unimaginable sadness when we were informed that our baby girl wasn’t developing as expected. After many tests and appointments, we were told that our baby had no chance of survival and likely wouldn’t make it to delivery, and if she did she would pass soon after. It was recommended that we end the pregnancy for medical reasons (TFMR). We agonised over the decision, although above all else we didn’t want our daughter to suffer, and so we made the heartbreakingly difficult decision to have the TFMR.  

After this devastating loss, we weren’t sure we could keep going with trying for a family. However, we were lucky enough to fall pregnant the following year with our daughter Mabel.

The pregnancy was a difficult one and I ended up being transported by air ambulance to The Mercy Hospital for Women in Melbourne at 26 weeks with severe preeclampsia. 

Mabel was then born at 28 weeks weighing 972g. She required intubation and within days of birth she had an early onset sepsis infection which required multiple rounds of antibiotics and a platelet transfusion. Mabel had ongoing high oxygen requirements throughout her NICU journey, and it was found that she had pulmonary hypertension. 

Mabel was born in 2020 at the height of the Covid19 pandemic. During this time hospitals had strict visitation rules which meant my partner and I were unable to visit the hospital at the same time. 

This made the NICU journey even more difficult, and Mabel was 3 months old before we could be together as a family in the same room.

Finally, after 109 days in the NICU and SCU Mabel was able to come home on oxygen support. We then had several additional hospital admissions and in turn sleep studies at the Monash Children’s Hospital which determined that Mabel also had Central Sleep Apnea. She then required oxygen support until she was 18 months old. 

Mabel is now a cheeky 3 years old, who is full of energy and just as much attitude, and we wouldn’t have it any other way. 

I hope to be able to use my experience to help assist in ways to best support NICU families during this difficult time in their lives.