Having our 5th baby was a stressful and very emotional time. Complications arose during the pregnancy, which resulted in a long stay at the hospital and frequent monitoring of our baby. During this time, we had discussed our baby being born preterm and therefore needing to be in the neonatal unit for care and monitoring. I was asked if a baby doctor could come and talk to us about the DIAMOND trial. A paediatric consultant and neonatal nurse came to see me, and they spoke about the trial and what would be involved; they also gave me some information to read. They explained they would give me time to read and think about it, discuss it with my whānau and come back in a few days. If we were happy to have our baby participate in the trial, they would bring some paperwork, including consent forms to sign. After reading the information and discussing it with my whānau, we decided that we would be happy to participate.
During the discussion with the paediatric consultant and neonatal nurse, they explained that the trial was looking at preterm nutrition for babies born between 32-36 weeks and that our baby would be randomised into a group for his nutritional monitoring and management. At this point in the pregnancy, our motivation to participate was to help our baby in any way we could. Having focused care around his nutritional needs and feeding routine was reassuring. In addition to this, knowing his growth and wellbeing would be monitored for two years was a bonus; it meant we could see how he was developing despite his premature birth at 34 weeks.
I was advised not to do any antenatal expressing due to the ongoing complications in pregnancy, so there was no colostrum available for my baby once he was born. Due to our high-risk pregnancy and knowing that our baby would be born early, we knew that breastfeeding would be the best thing for him; however, it would also be a challenge especially due to my poor breastfeeding history. But we felt that having support from the nurses and especially the input from the lactation consultant would be beneficial, especially while my breastmilk was establishing.
Louis was randomised into breastfeeding and intravenous dextrose for nutritional management; however, he did require a deviation to preterm formula until my breastmilk was established and he was fully breastfeeding on discharge home.
We were the first participants to sign up for the DIAMOND trial in Palmerston North. We were cautious and had many questions. The paediatric consultant and the neonatal nurse were able to answer these, and we were kept informed of the feeding plan and procedures. For us, being involved with the everyday routine for our son while in the neonatal unit was important. Meeting with the lactation consultant and having regular input regarding expressing and building milk supply and maintaining it was very much appreciated. Having ongoing support from the neonatal nurses was invaluable.
Being part of the DIAMOND trial has been highly informative and, overall, a pleasant experience. The staff and those involved with our son’s care were awesome. We felt we were able to bond well with our baby despite him being in an incubator for a couple of weeks. We were shown how and encouraged to care for our little 34-week old son. We learned a lot about the nutritional needs of a preterm baby and the importance of this. Considering my previous poor breastfeeding history, with lots of support and input, I established a good breastmilk supply and breastfed baby for six months, which was amazing.
My pregnancy was incredibly stressful and emotionally draining, which was also felt by my whānau. When our baby was born, the stress and worry then changed to more reassurance that he was well cared for and that a solid plan was in place for this care. Knowing he was a part of the DIAMOND trial and seeing him thrive and reach his little milestones while in the neonatal unit was such a joy.
I hope that our story and participation in this trial will help encourage other parents who may have the opportunity to be part of the DIAMOND trial to consider it. I believe the resources and efforts of all those involved will benefit our little preterm babies in the future, and for that, I am grateful.