As told by mum, K’Larose
After a spontaneous premature birth with my first born (who also spent 8 weeks in Wellington Hospital NICU) at 30 weeks. Then going on to lose 2 more babies after my first, due to issues with PPROM (Pre-term premature rupture of membranes). I then became pregnant with my last baby at the end of 2022.
My rainbow baby. I was ecstatic but also so fearful, as I struggled with my mind and my body about trying to keep this baby in as long as possible, with every avenue being checked off the list, such as progesterone pills, contemplation of a cervical stitch and also dealing with my Type 1 Diabetes too. It was a baby I absolutely longed for and tried ever so hard to make sure this baby came home. Everything was going good!
Until… One week after Cyclone Gabrielle here in Gisborne, on the 12th February 2023, my waters broke that night at exactly 21 weeks gestation. After such a stressful event such as the cyclone, I then had to navigate having PPROM happen again, after losing 2 prior babies to the same condition. I was scared and I was anxious, but this time around I had done my research on this condition. I had spent months and years learning what it is, getting real life advice on this condition. Yearning for my babies I had lost, I was deep diving into this information as much as possible in the hopes to understand. So I felt I knew what I wanted this time and I was adamant to fight as long as possible.
I went to the hospital as soon as my waters broke and I made a pact with my mum, who came to support me that we would be telling the doctors I want to carry the baby as long as possible. No matter the outcome. So I knew I had given this baby the best chance to survive or if not, then we knew I had tried my best.
That night at Gisborne Maternity, the doctors had given me my options. I was to either terminate the pregnancy in hopes to save myself from sepsis or other infections (as my T1D puts me at more of a risk for infections) but lose another baby. Or wait a week until 22 weeks gestation when medical care could intervene and save the baby, if nothing had changed physically with my pregnancy. Then I could fly to Wellington and live there in Wellington Hospital until I had the baby.
The 19th of February had come around and still nothing had changed physically and the baby was still there with a strong heartbeat with no signs of labour. And after days of organising with the team here in Gisborne, I was to set flight on Monday the 20th of February.
That day came and I was so nervous, but so full of joy that my baby was being given a chance at life.
With the support of my parents and grandparents who were staying behind at home, taking care of my eldest boy who needed to go to school and needed routine, I was able to go to Wellington knowing everything at home was going to be okay until I got back. Knowing I was going to Wellington, a place I once called home for 14 years and with a big brother who lived there, I assured myself I’d be okay. Off I went on my own from Gisborne to Wellington.
After a few days at my brothers, and then a few days in the hospital and after multiple check ups for the baby and I, I was then allowed to make Ronald McDonald House my home for the rest of my duration in Wellington. The rules were that I was able to look after myself there and family were allowed to stay and friends could visit me, but I was to visit the hospital across the road at least 3 times a week every week for check ups and if I had an emergency I was to tell someone.
Staying there really gave me peace of mind as I am such an independent person and staying at the hospital was giving me major anxiety as I needed some normalcy. I am forever grateful for the support and love I was given while staying at what my family and I called “Rons House”. I think having that place really saved my baby from coming any earlier as I was less stressed being there.
Weeks passed by.. And as the 27th week of my pregnancy came around I was starting to feel nauseous with heavy migraines and restless tummy pains. I decided I would tell my high risk team that I wasn’t feeling well at a routine check up. Blood tests were done and came back negative for possible causes of sicknesses, but I was adamant I wasn’t feeling right.
At 27 weeks and 3 days, I was seen by a maternity team and we talked openly about the possibility of inducing me due to my feelings of uneasiness. I was happy to go with that option as I felt I knew what was best for my body and mind at the time. That afternoon we decide it was time to be checked into a maternity suite and I was to take my first round of medication to induce labor. For two days I was in and out of contractions, nothing much was happening.
But at 27 weeks and 5 days, at 2pm on the 7th of April 2023 my beautiful boy was born at 2 pounds and 8 ounces, with very dark brown hair and the tiniest cry I had ever heard. He was finally here and a weight was lifted off my chest, although I knew a long journey was ahead. After a crazy pregnancy and an unfathomable last 2 days, the baby I fought so hard for was here. Alive and breathing! After a quick hold and a kiss, he was placed into a plastic bag and off he went to NICU.
Rome was intubated for the next two days. But then on the third day the team thought they would try to see if Rome could breathe on his own and put him on to high flow. A few hours passed and it seemed Rome was not in fact ready for high flow and because I was there visiting at that time when that decision was made – I was to come back and see him when they had finished intubation.
Not even 30 minutes later I was called and I was told to come back urgently and to bring a support person. Something nearly fatal had happened…When we got back to the room everybody was frantic and some of the team were in tears and doctors were huddled around Romes incubator.
Rome had a massive pulmonary hemorage as they were trying to intubate him, and because there was blood coming out of every hole in his body it took them longer to intubate therefore leading to Romes sudden arrest.
He was resuscitated for about 3 minutes and was successfully bought back to life.
However, because of this chaotic event, Rome was severely hurt and bruised, and was now at higher risk of passing away because of this. I hugged Romes nurse and assured her this wasn’t her fault and to not go home and carry this burden. I knew she did the best she could. That lady was amazing! As were all the nurses and doctors that were there that day!
We were advised he may not make the next 24 hours. I cried and prayed, and I talked to anyone who was around. To help me feel everything but also not feel the burden at the same time so I could be strong for my boy. I slept next to him in an arm chair next to the incubator for the next few hours and taking shifts with Romes dad Hamish, and my immediate family members.
He made the next 24 hours and then he made it the next 48 hours. And we were amazed! It felt like eternity waiting for him to get better in hopes to be able to see him open his eyes again. He was put into an induced coma for the next 9 days to let his body heal. Although he had survived long after the predicted time he definitely had a journey in front of him.
Two weeks went by and he was much better after no longer needing sedation but then got an infection from his long line getting removed. He then under went some brain scans because when he started to wake he was having such rapid eye spasms it seemed that he was possibly having seizures.
It was ruled out that they weren’t but in doing so with those tests, they found he had suffered a grade 2 brain bleed on one side of his brain and a grade 3 on the other. The outcome for that wouldn’t be as noticeable at the time but I was advised he would get followed up over the next few years as he grows older.
Rome was under so much stress and medication, that it was such a hard time not just for him but myself as well. My milk supply hadn’t always been the greatest but it definitely took a hit with the stress I was under. But I managed to pump milk from the day he was born until we reached home back in Gisborne at 33 weeks gestation.
As the weeks went on after that catastrophic event, he progressed onto high flow and then to low flow nearing the 31 week mark. At 33 weeks gestation we were cleared to go home to the Gisborne Neonatal Unit, on low flow oxygen and a number of medications and a long road ahead of us. We eventually left the hospital at around week 42, which would mean Rome was in hospital for 100 days and maybe a few extra.
Although Rome suffered tremendously, he also made a tremendous come back and that, I am so grateful for.
His resilience to fight as hard as he could, and for the Wellington NICU team that helped nurture my boy back to health so that we could spend the rest of our hospital days in Gisborne. I couldn’t thank all the teams at Wellington Hospital enough for helping my family and I along the way.
The diabetes team, the high risk pregnancy team, the maternity team, the teams at the Little Miracles Trust and NICU – we thank you all for all your hard work!
Rome has just turned 2 in April. It has been the longest journey of healing physically for Rome, as he still quite often gets sick and stays sick for a number of weeks after getting the flu etc, and is usually hospitalized at least every 2 months when he becomes ill. His chronic lung disease is really the only illness he suffers from long term due to his shaky start. And now has been told he has asthma and will live with it chronically either for the rest of his life or in hopes he will grow out of it one day. But the brain bleeds have seemed to resolve themselves and he seems to not be suffering from any affects from those, as he is a smart little boy.
Although he is sick often, he perserveres and has grown into his character and loves having the biggest attitude in the room! He is growing big and strong and is so smart, and loves life with his big brother who is also so happy to finally have a sibling to do life with.
Rome is enjoying learning everything the world has to offer – he knows Sign Language due to his dads family being deaf, which is a bonus in his learning and understanding. And is also learning Te Reo Māori as another language in the household as well as English. He is reliant on all 3 languages as his day to day communication, which just utterly amazes me!
His development and intelligence is amazing despite his previous health conditions and we are all so proud of him.
Rome and all his family would like to say another big thank you to all the lovely people who have helped him get where he is today. We are forever grateful and in awe of you all.
Ngā mihi nui koutou!
Arohanui, Rome, K’Larose (Mum), Hamish (Dad), Taimana (Big Brother) and all his grandparents and friends and whānau.
Thanks so much for sharing your personal story
We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.
If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you. Please email info@littlemiraclestrust.org.nz
If you want to help our support of families going through the stress and anxiety of a neonatal journey, you can donate here.
- The Little Miracles Trust provides support to families of premature or sick full-term babies as they make their journey through Neonatal Intensive Care, the transition home, and onwards. We do not receive any Government funding and are entirely reliant on the generosity of individuals, companies and organisations in the form of donations, value-in-kind donations, grants, sponsorship and fundraising events to supplement operating costs and fund our services and initiatives.
- As we are a registered charity (CC56619) with Charities Services New Zealand we will send you an IRD compliant tax receipt – this will happen automatically by return email.