Isabella’s story – as told by Mum

The moment I first realised that something was different about my pregnancy with Isabella was at my 12-week scan when a 2-vessel cord was detected. At my 20-week anatomy scan some congenital abnormalities were identified and I was referred to Maternal-Fetal Medicine for more comprehensive scans. We travelled from Kerikeri to Auckland (three-hour drive) for monthly scans, each scan not delivering the news we had hoped for. We were told that Isabella had a right multi-cystic dysplastic kidney, a few heart abnormalities and there was concern regarding the possibility of her having duodenal atresia. Consequently, I was told to make arrangements to move to Auckland at 36 weeks as it was vital that I deliver my baby in Auckland Hospital so that she could receive the adequate care she needed once she was born.

Isabella had other ideas and she was born my emergency caesarean at 30 weeks and 3 days on the 11th of February 2024 weighing just 1.425kg. I didn’t get to meet her straight away as she was rushed off to the NICU because of her prematurity and congenital abnormalities. This is when the full extent of Isabella’s complexities came to light and she was diagnosed with VACTERL Association, having the letters V (vertebrae), A (imperforate anus/anal atresia), C (cardiac anomalies) and R (renal/kidney anomalies).

On day 1 of her life, Isabella was taken to theatre for a laparotomy, duodenostomy and colostomy formation. I admit that I didn’t know anything about stomas until my precious Isabella came out of surgery with one. When I saw this little plastic bag attached to my baby I wasn’t sure what to think. It was very daunting to me at first until I met our fabulous stoma nurse Taylor. Over the course of the three months we spent in the NICU, Taylor taught me how to navigate life with a baby with a stoma. She showed me all the tips and tricks that came with changing a stoma bag. We even discussed the ‘it could be worse’ scenario in that sometimes a patient can have an ileostomy as well as a colostomy and often a refeeding device would be required. Someone must have been listening to our conversation that day as just as I was starting to get used to our new normal Isabella took an unexpected turn…

At 4 weeks old Isabella deteriorated and was rushed off for another operation. This time things were different as Isabella had been stable for a while so we weren’t prepared for surgery this time around. She underwent a small bowel resection and formation of an ileostomy, which resulted in her having two (double barrel) stomas. The risk with Isabella having a stomas from the small bowel is that they can often lead to high losses of gut fluids and important nutrients which would put her at risk of not receiving enough nutrition to adequately grow. Luckily for us Taylor suggested that Isabella become part of a case study for The Insides Company studying managing stomas in newborns. She was able to supply us with the neonate stoma refeeding device called ‘The Insides Neo’, a nutrient flow device designed to improve nutrition care in newborn babies with stomas, something I could never have imagined we would have ended up needing to use. Taylor explained that the machine collects lost fluids and nutrients from Isabella’s stoma bag so that they can be gently reinfused (recycled) back into the downstream gut at regular intervals using a standard infusion pump. This would in turn bring back Isabella’s natural intestinal flow and allow her bowel to start working normally again.

Isabella starting using the refeeding system on the 19th of March 2024, weighing 2.235kg on fortified expressed breast milk. Taylor spent a considerable amount of time showing the other NICU nurses how to use the machine and how far to insert the tube into the mucous fistula. She even drew a fancy diagram identifying Isabella’s colostomy and ileostomy and the mucous fistula for refeeding which was stuck to Isabella’s incubator. To begin with the NICU nurses had to keep records of Isabella’s colostomy output to make sure she wasn’t losing too much and that we weren’t refeeding her too much, too quickly. After a few days and numerous stoma bag leaks, we managed to figure out what refeeding rate worked best for her, about 7ml per hour, which meant that she was hooked up to the refeeding device for the majority of the day and night. It wasn’t an ideal scenario for our baby girl as she had so many wires attached to her that we had to be very careful when taking her out of her incubator for skin to skin. However, we knew it probably had little impact on her quality of life given that she was still a relatively newborn baby that needed time to rest and heal in order to grow.

On the 24th of April 2024 Isabella was finally big enough (2.8kg) and strong enough to have surgery to close her ileostomy. I am truly thankful for the opportunity we were given to use The Insides Company neonate stoma refeeding device as I believe that it allowed Isabella’s gut to absorb the nutrients she required to grow a lot faster. It also meant that when we were finally discharged from hospital on the 6th of May 2024 Isabella was able to go home with one stoma instead of two.

Having a premature baby comes with its own challenges but having a premature baby with two stomas is something I could never have imagined would happen to a baby of mine. I want to say a huge thank you to our stoma nurse Taylor for introducing us to the neonate stoma refeeding device and for all the support and guidance shown to us throughout this journey. We will forever be eternally grateful to you.

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