Matilda was born at 10:26am, Tuesday 9th of January, 2018. At just 33+1 weeks, Matilda was born alongside her identical twin sister, Charlotte. The Grant twins spent two nights in the NICU before being transferred into the special cares unit. Despite their prematurity and low birth weights, both Matilda and Charlotte were thriving. We spent a blissful two nights in the special cares unit with Matilda and Charlotte. Their big sister Avah loved coming in to visit and helping with her sisters’ feeds and choosing their bedding colours for the day. On our second and last blissful night in the special cares unit, I remember looking at Matilda in her dad’s arms and saying to him as I held Charlotte, “This is why we were blessed with twins, so we didn’t have to share the snuggle times.” That night Matilda coded 3 times and was transferred back to the NICU unit for one-on-one care.
It was at this point that we heard the words “suspected necrotising enterocolitis” for the very first time*. I had never heard of this disease before. We were given a printout that had very minimal information about necrotising enterocolitis on it. When we asked questions to get more information, we were told they couldn’t really tell us any more because they just didn’t know. At no point were we given the impression that we would be going home with only one of our babies. We were advised Matilda was very unwell, she would require strong medication, she may need a surgical procedure, and then after some time we would be able to go home. Or so we thought.
Matilda spent the next 4 days rapidly deteriorating in front of our eyes. Our tiny 1600g baby resembled the size of a 4-month-old, due to fluid build-up from acute kidney infection and stomach distention from NEC & E.coli sepsis. 
Matilda went through 26 antibiotic changes and nonstop blood tests to try find a miracle solution that she would respond to. Matilda underwent 2x laparotomies to assess and re-assess her internal injuries. We knew at this point that her condition was worse than anyone had anticipated. After the second procedure, our worst nightmares had come to life: Matilda’s small and large intestines had become completely necrotic and perforated. After many consultations with surgical teams around Australia and a team in the US, we were advised that the 10cm of potentially feasible bowel Matilda had remaining was not compatible with life. I will never forget the soul crushing devastation I felt in that moment. We were offered palliative care for our precious girl. Matilda passed away at 6:22pm, Tuesday 16th January, 2018 surrounded by her family.
Shortly after the passing of Matilda I reached out to the NEC Society. I needed to find out more about the phantom menace disease that came out of nowhere and took the life of my precious girl. Since 2018, I have had the privilege of attending the NEC symposium in Ann Arbor in 2019 & San Diego in 2023, participated in the wave of light, and advocated on NEC awareness day. It is an incredible honour to be a part of the Patient- Family Advisory Council for the NEC Society in memory of my Matilda and help build a world without NEC, alongside so many incredible people from all walks and professions of life.
Shortly after the passing of Matilda I reached out to the NEC Society. I needed to find out more about the phantom menace disease that came out of nowhere and took the life of my precious girl. Since 2018, I have had the privilege of attending the NEC symposium in Ann Arbor in 2019 & San Diego in 2023, participated in the wave of light, and advocated on NEC awareness day. It is an incredible honour to be a part of the Patient- Family Advisory Council for the NEC Society in memory of my Matilda and help build a world without NEC, alongside so many incredible people from all walks and professions of life.
To this day Charlotte loves to tell me the foods she and Matilda both loved and the music they would dance to in my tummy during pregnancy. Both Avah and Charlotte share dreams they have about their sister. Nothing makes my heart happier than knowing, despite the years since her passing, they are both still so connected with Matilda.
* Matilda’s family lives in Australia, where the disease is spelled “necrotising enterocolitis.” In the US and some other parts of the world, the spelling “necrotizing enterocolitis” is used.
