July 25th, 2019, the day our daughter was born 13 weeks early. For me, looking back on this has and always will be incredibly moving. Although at the time of her birth I would never have believed that. I went into spontaneous labour at 27 + 6 weeks, early hours in the morning. Waking with pains, never did it cross my mind that this was labour. It felt familiar, but for whatever reason I did not connect the two. I was mindful of ringing my midwife, and I told myself I was to ring her at a polite hour. So 7 a.m. hit, and I was on the phone to her. We organised for our 3-year-old son to go to my mother-in-laws, little did I know that I would not see him again for 3 days. I felt a huge sense of guilt that I was unable to see him and explain to him what was going on. My heart ached that our family was not together. When in hospital, specialists could quite clearly see I was in active labour, and through an internal examination could see that I was dilated. I had nifedipine and magnesium sulphate to try and stop the contractions; however, both were unsuccessful. Thankfully, I managed to have one dose of steroids to help Kennedy’s lungs before she was born. For someone who has experienced post-traumatic stress (from a traumatic labour and category 1 emergency caesarean section) and postnatal depression with my first born, I was surprisingly calm. How? I do not know. Our plan of how we were birthing Kennedy looked very different to what was happening currently. I was meant to be having an elective caesarean section. While in labour I asked for a caesarean section, I was scared. I did not want to have a vaginal birth. Unfortunately, I was unable to have a caesarean section, as we needed to keep Kennedy in utero as long as we could. The position of Kennedy meant that I had to have an assisted delivery (lithotomy) as she was posterior, and was also sitting quite high up. I remember the medical team commenting on how calm I was and that it did not marry up to how far along I was in labour. When Kennedy was born (1260 g), I could not and did not want to look at her. I knew as a Mum that this is what you should do, but for me it was too painful. I needed to in that very moment protect myself. I had to. I had to be strong within me, as I knew that from this moment forward our lives were going to be very different. Kennedy was wrapped in plastic and required inflation breaths and oxygen, after 7 min she was intubated and taken round to our Special Care Baby Unit. We were not allowed to go with her, and had to wait until we were told we could. This feeling is one that I still feel as I write this. My heart felt empty, that I was not with my baby. She was without her Mum and Dad, how could we do that to her? We were finally allowed around, after one and a half hours. Seeing Kennedy in the incubator, with wires and monitors attached was hard to process. And to this day, it still pains me. We knew that our SCBU (Special Care Baby Unit) could not take Kennedy and we would need to be flown to Wellington NICU (neonatal intensive care unit). I was unable to fly with Kennedy as I was not 12 h post delivery. So I watched as my husband and daughter were taken away by ambulance staff to be flown to Wellington (320 km away from home). I arrived in Wellington after 15 h of being separated from Sam and Kennedy. I saw Kennedy was stable, and my anxiety settled. After 19 h Kennedy was extubated (CPAP (continuous positive airway pressure)), and stayed on this until she was 32 weeks gestation. I knew Kennedy was a fighter, and was going to make us proud. I remember the moments of being proud. Proud when she got to full feeds and the long line came out, proud when she went from CPAP to high flow, proud when she had her nasogastric tube removed, proud when she was able to come off oxygen at home, and proud of every single thing she achieved. I also remember the moments of being disappointed. Disappointed in Kennedy not tolerating feeds, disappointed that we weren’t ready for a transfer home, disappointed she needed a blood transfusion, disappointed that she had a grade 1 and grade 2 brain bleed, disappointed that she needed further eye checks for retinopathy of prematurity (ROP) disappointed that she had to go back on CPAP after the flight home, disappointed that her oximetry showed she needed to stay on oxygen, and disappointed that I felt disappointed. Breastfeeding was another traumatic experience I had with my first born. We as a family had decided prior to Kennedy being born that she was going to be a formula-fed baby. When she was born 13 weeks early, I knew within my heart that I needed to change my mindset with this. I knew that in order to give her the best chance and start at life, I needed to give her breast milk. I started expressing 1 day post delivery, and this started my 6 months expressing journey. I do wish that there was more information and support given around how to feed your baby. Not just looking at the present moment, but as they become closer to term, and then post NICU or SCBU. Thankfully, I had an amazing Lactation Consultant in NICU; however, I felt I had to really seek to find help and information. I know every feeding journey is different; however, I think more support or information is needed to help inform parents of what feeding your premature baby might look like in certain stages. Kennedy also had human milk fortifier to supplement her feeds.
Having a premature baby is no easy journey, and instantly you place a whole lot of faith and trust in your medical team. You quickly gain some basic medical knowledge that you had never heard of, or imagined you would learn. On our journey, I felt I could trust and relax more with the medical people that would connect with us. Connect with us, as humans, as parents and acknowledge our fears and worry in what was happening for us. For me, there have been times when I have struggled with some medical information, and I know that has purely come down to a lack of empathy from medical staff. Delivery of information and terminology is really important to vulnerable parents. My wish to neonatal researchers is that there is a focus on the family unit, not just medically, but also emotionally and mentally. Here in New Zealand, there is little support for parents mentally. After having postnatal depression and post-traumatic stress disorder with my first born, I had to fight pretty hard to want to be me and to want to be a Mum. I learnt and have grown so much. So for me having a premature baby, I 100% was scared that my mental health would suffer. I tried to engage within the medical system to get some support; however, I was told because I was doing okay, the support was only there if I was not doing okay. I wanted to be proactive, I knew I needed to be strong and well for myself, my family and most importantly Kennedy. I had to seek private help from a psychologist, at a cost to me and my family. A huge financial cost, at $175 per appointment. I was seeing her weekly. Parent’s mental health is absolutely a priority when having a premature baby, and unfortunately, I saw that this was not reflected in any support or services from NICU, SCBU, or the Mental Health team within my district health board. This saddens me, it scares me and it worries me. I wish it was different. I wish there was psychological support for the families, not just the parents but also the siblings. I know that my son’s world absolutely changed the day his sister was born 13 weeks early. We did the very best we could to support him without any external support.
To the neonatology researchers I thank you. I thank you for your passion and fight to help our premature babies. Thank you for knowing how to support our tiny babies to adjust to tasks that they are not ready to do; their lungs to breathe and their immature guts to process milk. Also knowing how to use oxygen therapy safely, and even knowing to lift their tiny legs when doing a nappy change needs to be considered, and the many other challenges they are faced with. Please continue the fight to have neonatal research as a priority, as we know there are significant lifelong consequences for premature babies. Please continue the fight to get funding and more funding to help fund your research. I thank you, because without the advances in your research field Kennedy’s journey might have looked very different.
In order for us as parents to give our premature babies the best outcomes in life takes a whole lot of trust, fight and knowledge. How do we do this? I would like help in knowing how I can best support Kennedy, how can I educate myself in knowing what being premature means for her? What potential lifelong consequences could she be faced with? I know some of these answers might be hard to answer, but it is those questions that I do have in my head each and every day and I know I will continue to for some time.
Kennedy is now 11 months corrected, 14 months old. I look at her and can’t believe how far she has come, and how far our family has come. We have just come back from a Bayleys assessment, and my goodness I am proud. Proud of how well she is doing, proud of how much she is surprising everyone with her developments. Her journey will always be close in my mind and in my heart.
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Moroney, K. Family reflections: premature baby. Pediatr Res 89, 705–706 (2021). https://doi.org/10.1038/s41390-020-01296-3