I’m very interested to see the results of this study and I think there will be findings to help babies born in the future. I’m hoping that when it comes time for baby number two, we can take part in research again!
I’m happy to have been able to help and I’m looking forward to finding out the outcome of the research in due course. I think I’m definitely more open to other studies now that I have done this and had a positive experience. I thank those involved for their important work!
I’m proud that my two boys have been able to contribute. By participating in research my whānau has contributed to improving the lives of mums, and to saving the lives of future babies
I like to think that contributing to research in New Zealand has come full circle for me and my whānau. We have certainly benefited along the way from those who came before us and contributed to studies that have helped us to better understand our babies and their needs
My journey with hPOD started in 2019. I was approached after my daughter Kaia was born. When I was asked to participate in the research, I knew straight away that it was my responsibility, not only for my daughter and my son but also for our future generations, to participate in something like this. I am the third generation in my whānau with diabetes, and I wanted to break that cycle and be a part of anything I could to minimise the risk of my kids developing diabetes as they grow up. So when I was approached to do it, I knew it was something I wanted to do, but I knew I had to consult with my whānau, my partner, and make sure it was something we all committed to together.
My sister had also taken part in the hPOD trial, and she was all for it as well and said this is something we need to do as a whānau, so she encouraged me to get on board with hPOD.
What do you think are the benefits of having taken part? The realisation that being part of hPOD has contributed to my future aspirations for my children and my whānau, hapu, and iwi. Contributing to this type of research which I don't feel has had much Māori representation, I feel like I have restored some mana for my own whānau being a part of something this important.
How is Kaia doing? She is doing amazing. She is now two years old, thinking that she is five. She is bright, bilingual. She is loving play which is really important for her development. Healthwise, she has never had any serious hospital admissions or anything like that, I feel hopeful for her future.
Has being in hPOD changed your thoughts on clinical trials? Being part of a clinical trial, I used to think wasn't for someone like me. Now I very much think that anyone could be a part of this type of research.
How can we encourage more Māori to get involved with research? For my whānau, this becoming a normal conversation has been really helpful. I think it is about normalising research. Having conversations about health can at first feel shameful or be a courageous conversation to have, so it can be a bit difficult when you first start talking but as soon as that happens, it's a bit like ripping a band-aid off, and the healing starts.
How have you found clinical trial follow-up visits? I have found them really fun, and my daughter just wanted to play with everything at once. I found home visits perfect because I can imagine taking a child, especially a pēpē, out of their safe space at home, putting them in a different environment, and then expecting them to explore things, that might not work. So, the fact we were able to do follow up visits in the safety of her own home, she was really comfortable, and we were getting the best engagement out of her. I found the visiting really positive.
What would you say to a friend or whānau member if they were asked to participate? If I were approached by a friend or whānau member asking for advice, my first question would be, why not? I would then talk about my experience and benefits for our future children and our experiences as Māori women and paving the way for the future.
Any other reflections on your participation? Having learned that the results of hPOD show how positive the trial has been in terms of finding a way to help minimise the risk of brain damage for our pēpē is really humbling to hear. Having thought of the purpose and why I wanted to take part, that is just beyond what I would have thought could have happened, especially on a global scale. That makes me really hopeful for our tamariki and our mokopuna in the future. I can't wait to see what else develops from this research.
It gives me goosebumps thinking about our mokopuna in the future, having the results of this play out. Maybe mokopuna in the future will be like, 'my nanny Rangi was a part of that!', so it's really humbling to hear, and I'm actually quite excited for what's to come.
What are your hopes for Kaia's future? Reflecting on the trial results, there's very much the idea around the risk of minimising damage to the physical brain, but also the spirit of the brain is important. My aspirations for Kaia are that she is physically safe and grows up to meet her goals. So, in a scientific world, I hope she has access to all she needs and minimised risk in that sense, but I also hope that the spirit of her brain, and the spirit of who she is, is also intact.
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.
I found out about the possibility of taking part in research while I was pregnant when I received information in the mail and via email about the C*STEROID feasibility study. At that stage I wasn’t sure I was going to have a caesarean section, so I didn’t decide to go ahead with participating in the study until about a week before I had my little boy, Theo.
I was quite interested in taking part after reading about the study, but I also discussed it with my obstetrician, and he was very positive about it. His opinion (from my memory) was that if anything, the checking of babies’ blood sugars after birth (a key part of the study) can only be helpful. We discussed how babies that are in higher risk groups (high/low birth weight, mums with gestational diabetes etc.) get tested, and that if blood sugars are so important for babies why are we not routinely testing. Potentially that’s something this study could find out too. So, for us it was a way we could have more checks that our little one was getting the best possible start.
At first, I was a little hesitant about the study’s steroid injections. I discussed them with my obstetrician and confirmed it’s a steroid that is already in use, so after realising that it is just being used in a different way, I became confident that I did want to participate.
All the research staff I was in contact with were very accommodating and friendly, especially since I only decided to participate very close to the end of my pregnancy. I also liked the fact that taking part gave me something to do while I was off work!
I’m very interested to see the results of this study and I think there will be findings to help babies born in the future. For our family, our little man ended up on the lower end of the weight scale at birth (he’s now thriving!) and he had low blood sugar results, so instantly it was beneficial for us to have taken part. We also had support from the researchers and staff on the ward every hour for the first hours of his life to ensure he got back on track. We then had help from research staff with feeding and general positive support and encouragement in caring for our newborn. I’m hoping that when it comes time for baby number two, we can take part in research again!
During my pregnancy with our first-born son I was approached by my midwife to participate in the GEMS study. I knew nothing of the study and even less about being a research participant. A few things led me to consider participating. My older sister had struggled with gestational diabetes with both of her pregnancies and I felt that anything I could do to contribute to knowing more about gestational diabetes, especially within New Zealand, would be helpful. I also remembered my mum participated in a research study in the 80’s when I was a baby, I obviously don’t remember participating but I do remember being told about it as a child and feeling a sense of pride knowing that I had contributed to something that would benefit future babies. Lastly, the GEMS study made sense and did not require a lot from me. Standard antenatal care included testing for gestational diabetes and other than a few questionnaires, participating was not difficult or time-consuming.
Taking part in the GEMS study was a great way to dip my toes in the water of research participation. The research team were lovely and kept me well informed. After meeting some of the research midwives and clinicians I was invited to attend this year’s ON TRACK Network trial development workshop as a consumer. The workshop was so interesting. I enjoyed seeing how research projects evolve and was happy that as a mum I was invited to give my input about research designs. My participation in the workshop led to me joining the Forum’s Advisory Committee with other mums to help ensure those most impacted by research have their voices heard.
I think as a naturally curious person I was inevitably drawn to the research community, especially in the wild first days with a newborn. Our son was born at 36 weeks and had great difficulty feeding. Though we didn’t participate in any studies around late premature infant feeding I recall seeing one later and thought it would have been helpful to join. I would like to know the findings as I would love for future mums struggling to feed their newborns to have access to better guidance to refer to during those difficult times.
As a social worker I have always been aware of how important research is – how can you recommend an intervention, a solution, a therapy, without first knowing if it works? Studying these big questions is vital work, and becoming a mum solidified this for me. I now undertake research in my own field of work and am always appreciative of the people and whānau who so generously share parts of their parenting journeys with me.
I like to think that contributing to research in New Zealand has come full circle for me and my whānau. We have certainly benefitted along the way from those who came before us and contributed to studies that have helped us to better understand our babies and their needs. And now I can tell my children when they’re older, “did you know, you helped researchers better understand gestational diabetes? That’s you, in those studies. You helped develop that knowledge and now mums and babies are better off for it.”
Back in 2016, when I was child-free and didn’t have a single grey hair, I was scrolling through Facebook and a sponsored post popped up looking for pregnant women to be involved in a clinical trial. It was for the NIPPER trial, which involved taking a supplementary drink during pregnancy (very similar to leading pregnancy vitamins, with a couple of additional supplements thrown in). The whole thing looked very beneficial, so I had a chat with my husband, we registered our interest and our participation in research went from there.
Given New Zealand’s relatively small size, I’ve always been impressed at what we’ve been able to contribute to clinical research globally concerning the health and wellbeing of babies. For example, look at the findings from the New Zealand cot death study in the 1980’s, which resulted in changes to baby sleeping habits internationally. So, when I saw the opportunity to contribute to ongoing research, I really felt compelled to be part of it.
With my first son, Archer, we had several appointments throughout the pregnancy where my bloods were checked, and we also had additional scans. Being my first pregnancy, this was all very reassuring. When I became pregnant with my second son, Beau, I received some information in the mail regarding studies that were currently running from the Liggins Institute at the University of Auckland. I had a follow up phone call from one of the research midwives and we discussed the C*STEROID feasibility study. Although by this point, I felt as though I knew and trusted the research team, I still ran this past my Obstetrician who was extremely supportive of me being involved. To have the approval of an independent medical professional is always reassuring.
The C*STEROID feasibility study was a lot less time consuming than the NIPPER study, consisting of only two appointments just before birth. However, we still definitely benefitted from the additional care we received through being involved in a research study.
Following Beau’s birth, we were visited by research midwives from Liggins to take his blood sugar levels. It was picked up that he was slightly hypoglycaemic where his blood sugar (or glucose) was low, which he probably wouldn’t have been tested for outside of the study. But even more importantly, our research midwife picked up that Beau was struggling with his breathing and rallied the hospital staff to get Beau transferred to NICU for the additional care he needed. I really can’t express how grateful I am to have had her there to help Beau when he needed it.
Being involved in a clinical trial not only gives you the altruistic feeling of being involved in something for the greater good, but also (more selfishly) gives you additional checks and monitoring which you might not get otherwise. Pregnancy and childbirth can be a stressful time, and if you’re a natural worrier like I am, having an additional set of eyes monitoring your little one can be a great comfort.
I’m proud that my two boys have been able to contribute. By participating in research my whānau has contributed to improving the lives of mums, and to saving the lives of future babies.
After having one very early baby and 102 days in NICU, we want to help any other family that may go through a similar journey and right from the get go, despite all the stress, we were completely open to being involved in anything that could both help our baby as well as future babies going through this rollercoaster of extreme prematurity and NICU.
We were in the delivery suite; my waters having broken at 23 weeks and 1 day with discussions around labour becoming quite stressful due to the extreme prematurity of our baby and her breech position. I recall the first research being asked about as a ‘no brainer’’ – the APTS trial (Australian Placental transfusion Study).
We were informed the trial had already been done on a large number of full-term babies throughout Australia and New Zealand and now they were looking at preterm babies. We were approached gently, without pressure and with clear, black and white information - we would either be randomised to have delayed cord clamping (1 minute) at the birth or not and if our baby was struggling it would be abandoned and clamped immediately so she could be taken to resus. We were informed quickly we’d been randomised to the delayed clamping group and in an extremely tense theatre situation just over 24 hours later, our tiny barely viable baby received this delayed clamping (in what seemed like the longest minute of our lives!) and I often wonder if this has helped her survive and do so damn well!
In those early, harrowing days following, amongst the fear and concern with having such an early baby, we were approached to take part in both the PROVIDE/protein trial and the HINT2/hypoglycaemia and insulin or blood sugar trial. We were so exhausted and unable to process whether there were any absolute clear positives for our baby as an individual for the protein trial, thus opted out. We felt no pressure whatsoever from the doctor for making this decision and we moved on. We did question our decision once or twice, but also had to put our baby first and being where we were at the time, we weren’t 100% certain it would be of help or not for our individual situation.
The HINT trial, however, we agreed to, mainly because we knew we could withdraw at any time. At some stage in the piece we did stop, but were reassured by one of the researchers that we had already helped provide what sounded to be valuable measurements and information to assist in their research in one small way, which was all we felt we could do as parents.
The other research I recall spending some time with one of the researchers on was more qualitative – considering the social and emotional aspects of being a parent with a baby in NICU. Again, we were approached extremely gently, with no feeling of pressure or necessity to take part. Our baby’s daily NICU routine and what we had on for the day in general was fully respected to allow a time for us to speak with the researcher that worked with us without stress or worry and they listened patiently, with what appeared to be interest and with empathy.
Any part mothers or parents of babies can play in helping research that aims to improve the health of mothers and babies across New Zealand is vital. We should be proud as such a small country we are making such exciting progress in this field.
As soon as I became pregnant with my second baby, I knew that I would be having a caesarean section. I had an emergency section for my first baby and so wanted to just go ahead and schedule it in for my next one. The first time I heard about the C*Steroid study was when I went to my initial appointment with the obstetrician at Tauranga Hospital. I saw the posters in the waiting room and then discussed it further with the nurse while I was being seen.
My first instinct was to participate in the study. I have spent my whole career in the healthcare sector, and I am always keen to be involved in research. But also, I had my first baby while living in the USA, where it was just expected that your baby would have heel pricks in the first few days and a variety of tests would be carried out. I understood there was information needed that could be answered by research in this sweet spot of time that mums scheduled for a c-section could help with. I had no reservations, but I did make sure to discuss it with my midwife to make sure she was supportive too.
I had to visit the hospital twice the week before the c-section date, this was a little out of the way for me but each time I went I was treated very professionally. I always felt I could ask questions and it gave me an opportunity to look around the maternity ward and get to know some of the staff. The injections themselves were fine, not too painful, and it was a quick procedure.
Once my baby was born it was a little tough to have to watch him have the heel pricks, but it was also really reassuring to know the results of the tests and to see that his blood sugar levels were all okay. It seemed some nurses were better at getting the blood faster than others. A tip for other mums would be to try to have your baby’s feet nice and warm before they come to do it. If their feet are warm, then the whole procedure seemed to go a lot faster.
I know I won’t be having any more children, but I do hope that this research is proven to be valuable and it would be amazing to know one day if I got the steroid or a placebo. I suspect I received the steroid because for a day or two my hip pain seemed to get better, but even if I received placebo, it was worth it!
I remember receiving a couple of emails and maybe something in the post about the C*STEROID feasibility study, I can’t recall too clearly now. With the first email, I’m ashamed to say I didn’t pay it much attention as I was busy and not really thinking yet about the delivery of my baby! But when I was contacted again in my third trimester and closer to the delivery date, for whatever reason it grabbed my attention. I spoke to my obstetrician about it and she knew about the study and said it was run by reputable people. She also talked me through what it was about. I then spoke to one of the research staff to find out more.
My doctor having confidence in the people running the study and assuring me that it was well run influenced my decision to participate. My sister in law had also just delivered about 4 months before I did and both she and my brother are doctors. I asked them if they knew about the study and it turned out she had participated. That also helped alleviate any concerns I had. My only concern was that I didn’t want to put my baby at undue risk, but I was comforted by the fact the steroid injections being tested in the study were already routinely administered during pregnancy for premature babies to help them.
Although I was not overly keen from the outset as I was busy thinking about other things, once I focused my attention on it (again I’m sorry to say!) and spoke to my doctor and sister in law I became increasingly interested in taking part. I didn’t have reservations per se at the start – more just wanting to find out what it was about and the risks. I was quite keen to help if I could without putting my baby at risk. I think between me turning my mind to it and making the decision it was just a day or two – and most of that time was to speak to all involved. Once I found out about it and obtained the necessary information it seemed an easy way for me to contribute without any real risk of harm to my baby.
My experience of taking part is that it was easy, pleasant and I’m happy to have been able to help. I needed to make two trips to get the steroid injection before my caesarean section, but it was close to my obstetrician and place of work, so I managed to fit it in without too much inconvenience. The midwife who tested my baby’s blood sugar level after she was born was also very responsive, so we communicated well to ensure the blood test was done before a feed without too much effort.
I’m happy to have been able to help and I’m looking forward to finding out the outcome of the research in due course. I think I’m definitely more open to other studies now that I have done this and had a positive experience. I thank those involved for their important work!
Gabbi and her husband Justin were told their baby girl had intrauterine growth restriction (IUGR) when Gabbi was just 20 weeks pregnant. They were invited to participate in the STRIDER clinical trial by her Maternal-Fetal Medicine Consultant at Adelaide's Women's and Children's Hospital. Here is their story.
There are too many negative, scary, and sadly tragic stories. I feel for everyone that has experienced the pain of losing their child before it had time to be introduced to our world. This story only ends in happiness, if only to give others a glimmer of hope when they too need it the most.
About 20 weeks into my pregnancy, my ultrasound scans revealed that our baby girl had intrauterine growth restriction (IUGR). Her abdominal circumference and limb length were relatively small for how far along in the pregnancy we were, whereas her head circumference was on track. The dopplers showed uteroplacental insufficiency, meaning the blood flow from the placenta to the umbilical cord to our baby was abnormal. As a result, our baby could not receive adequate nutrients and oxygen, making it difficult to grow and thrive while in utero.
There is no definite cause for IUGR; however, amniocentesis was completed to rule out any genetic defects. A Fluorescence In Situ Hybridization (FISH) test showed two copies of chromosomes 13, 18, and 2, which ruled out triploidy, where babies are born with an extra set of chromosomes in their cells. However, a chromosome array showed a variant of 'unknown significance,' which was not present in the blood samples of my husband Justin nor me. It was a small 653kb duplication on the short arm of chromosome 12. A global database and literature search did not show any similar cases recorded; therefore, the clinical significance was unknown.
A geneticist highlighted to us that the duplication contained two genes known to cause human conditions. One is a gene called ETV6, which is associated with thrombocytopenia and increased risk of leukaemia. The other is LRP6 which is associated with coronary artery disease in adult life and missing teeth. However, these problems have been reported with deletions or intragenic mutations rather than duplications, so it was uncertain whether they would occur in our child. A variant of 'unknown significance' literally means that. At one end of the spectrum, it could be completely harmless in impacting the physical and mental development of a child. At the other end of the scale, it could cause a serious problem. The positive aspects were that the duplication was relatively small, and no known genes cause intellectual or physical disability in this duplication. Furthermore, it also could not be confirmed whether this chromosome duplication was the cause of the placental insufficiency that had been observed on the ultrasound scans, restricting our baby's growth, or whether the growth restriction was indeed due to a genetic disorder.
It was suggested that if the main problem was placental insufficiency, the baby would be expected to be small at birth but could demonstrate catch-up growth. However, babies born with low weight could experience various other health issues. Another issue was that we were not confident just how long our baby girl could stay inside my womb. If our baby was not demonstrating sufficient and consistent growth inside the womb, she would need to be delivered. We were told, however, that delivery may potentially be as early as 24 weeks. Due to the IUGR, how small she was for her age, and potential extreme prematurity, the risks associated with our baby girl being born that early were very high. Many IUGR babies die in the womb before delivery without ever developing enough to have a chance of surviving. Babies that do grow large enough to deliver are at risk of hypoxia, lacking oxygen from underdeveloped lungs, resulting in poor health and development during infancy and through to adulthood.
Due to the IUGR and potential genetic abnormality, we were asked to decide whether to continue our pregnancy. We only had about two days to decide, as we were nearing the 'in-practice' abortion cut-off date, which is 23 weeks. We were utterly devastated, and it was the worst feeling of our entire lives. I could never have imagined feeling so much confusion. Justin and I couldn't function properly for 48 hours, as every possible scenario kept churning over and over in our minds. How could we properly decide on the fate of our baby? Considering we did not know for sure the definite outcome on our baby's health and development, it just didn't seem right, nor fair, for us to terminate our pregnancy based on the information we did have. There were too many unknowns, and while there appeared to be a chance that the pregnancy could have quite a negative and challenging outcome, there also seemed to be a chance we could give birth to a relatively healthy baby with no major health issues at all.
We collected all the information, statistics, and advice we could get from a team of doctors. We collectively decided to ignore the genetic duplication, as we were advised that it seemed more likely that our baby's slow growth and small size was due to placental insufficiency. We had to have faith and hope to make it as far into the pregnancy as possible. We had to have faith that our baby was growing consistently enough to stay in the womb for as long as possible to make it past delivering an extremely premature baby.
There is currently no treatment to improve a baby's outcome once a growth restriction has occurred. Very frequent monitoring of the mother and baby aims to predict when the fetus has maximised its time in the womb, and the risk of hypoxia and death is so high that delivery is required. We were invited to participate in a study named "A Randomised Controlled Trial of Sildenafil Therapy in Dismal Prognosis Early-Onset Intrauterine Growth Restriction (STRIDER)." The purpose of this study was to investigate whether a drug called Sildenafil (also known as Viagra) may safely improve the blood supply to babies with severe IUGR. It may be possible that by improving the blood supply to the baby, it can grow better and remain in the womb for longer. Therefore it would be less susceptible to the risks associated with extreme prematurity.
The study was a randomised, double-blind placebo-controlled trial, meaning that there is a 50:50 chance on whether I consumed the actual drug or an inactive 'dummy' placebo treatment. There were hopes that the study results would confirm whether Sildenafil affects fetal growth and ultimately improves outcomes for babies affected by IUGR. The babies of the two participants that had been in the study before me did not make it far enough into the pregnancy and tragically passed away.
While I was upset and scared about the outcome of my own pregnancy, it felt good being able to take part and contribute to this study so that in future, other women that experience IUGR may not feel as helpless as I felt and be confident that there is a way to treat the issue for a more positive outcome. I was assured that the treatment would not be harmful to myself or my baby, so I had nothing to lose.
So many restless nights were spent looking for an answer. I just wanted to know whether our baby would be healthy and develop normally. I was searching for something, anything, knowing that the rabbit hole of the internet and the endless amount of information and stories would not give me the answer I needed. My sleep was plagued with nightmares, and I would frequently experience sleep paralysis, to the point that I was so anxious that I was too scared to sleep.
We were prepared for the worst. We knew that we might have to deliver very early into the pregnancy, and we were informed about the side effects of prematurity. We were taken on a tour of the Neonatal Intensive Care Unit (NICU) to familiarise ourselves with the space and the equipment if our baby needed to spend time there. We were mentally prepared for the worst. But we also knew we had to stay strong and hope for the best. The NICU is a place of tiny miracles. And the mothers of these babies have so much strength and courage. They seemed so strong as they watched over their precious tiny ones, and I didn't know how I would have the strength to sit and watch over a baby hooked up to tubes in the cribs as they did. I didn't know how I would have the strength to leave the hospital after delivery without a baby in my arms.
But as each week passed, each weekly scan showed us that our baby girl's growth was still consistent, although her size was a few weeks behind for her age. As time went on, the extreme risks faded away. Every weekly scan, our obstetrician could see improvement and assured us that the growth was good enough not to have to deliver that week. Over the next ten weeks, the dopplers even improved, and there seemed to be faster growth. Whether this was because I had been given the Sildenafil or whether this occurred naturally, we won't know for a while. I know that I could keep our baby growing safely in my womb until I was 37 weeks into the pregnancy. Because our baby still measured very small, at about the size of a 34-week baby, even though she was 37 weeks and was breech, we were scheduled for a cesarean section.
The happiest, most emotional, and utterly joyous moment of my whole life was on 20 April 2016, when our precious baby girl Eva came into our world. She weighed 2050g but was breathing well and had no signs of distress. She did, however, need to be sent to the NICU to stabilise her temperature in an incubator. Meanwhile, I had hemorrhaged in recovery and nearly had to have a transfusion due to dangerous levels of blood loss. After about 4 hours, I was stabilised and resting in my room when Justin wheeled Eva in to see me. I was told it looked like she could stay with me provided her temperature remained stable, and she didn't lose too much weight over the next few days. My heart exploded in happiness and disbelief that she was well enough not to be in the NICU, and I've replayed that moment in my head almost every day since. Over the next few days, Eva's weight dropped to 1800g, but she was monitored closely, and I could express enough colostrum for her. We had her on a very strict feeding schedule, and because Eva was too weak and small to latch onto my breast, I expressed every few hours, and we fed her through a syringe. After three days, she started gaining weight again, and we were discharged after six days in the hospital.
We never got the hang of breastfeeding, but I was adamant that she receive my milk; therefore, I expressed every three hours for five months, and she drank it with a bottle. By the time Eva was six months and eating three solid meals a day, I struggled to express the quantity she needed, so I weaned off and gave her formula.
My mum recently asked me how I felt about everything; about the pregnancy, about the birth of Eva, about being a mummy. I now know that words cannot possibly capture just how deeply a mother loves her child. All I can say is I feel truly blessed!
I am thankful every day. I am thankful to the doctor who gave us hope, my family, who reassured us that they would support us no matter what decision we made, and who are continuously helping with Eva. And of course, I am thankful to Justin, who never left my side and is there every day with me, being the best Daddy that Eva could ever ask for.
Eva is now over five years old and is a healthy, happy, and energetic girl. She is a little shorter than the girls in her year level at school but has developed very normally, and nothing holds her back! We also have since then had another daughter, Zoe. I didn't experience IUGR with her pregnancy. Each pregnancy and experience is different and cherished forever.