My name is Bailey and I am an ECE teacher. My husband and I were very excited to learn we were expecting a baby girl, due in August 2021. My whole pregnancy was really great. Aside from the typical morning sickness at the beginning and the sore body towards the end I was enjoying being pregnant and was happy with how the baby was growing. Fast forward to 35 weeks and I began to have reduced movements and ended up driving to hospital each night for about four days in a row to have her checked on, each time being sent home as they believed she was okay. I went for a scan around 36 weeks to check her out and was shocked to find out that our baby (Kiani) had cysts in her brain. We were very scared and nobody seemed to know the cause or what they meant.
I was booked for a follow up scan at the hospital on Friday the 16th of July, to see what other information they could gather. After having my scan in the morning, I waited hours for a doctor to be available to speak with me about my results. In the afternoon we finally had a doctor come in and ask to speak to us, and in came the surgeon as well. She sat us down and explained how she was not happy with Kiani’s blood flow from the placenta and that every time I had a Braxton Hick her heart rate dropped very low. She told us that Kiani would be born today, and not via induction as her heart rate was a concern. I was then told, in the next available time slot I would go in for an emergency c section. Even as I type this I can still feel that awful, terrified feeling that I felt then. The complete unknown at my first ever surgery, let alone the fact that obviously my daughter’s condition was enough of a worry that she needed to be helped right now. Within the hour I was prepped for surgery and getting my epidural. My husband was so strong and supportive, ready to hold my hand and help me through whatever was to come. My sister and mum came to visit me before I went in and offered words of encouragement and love.
My entire c section from the time they began the surgery to when she was out and on the bed was only about twenty minutes. Kiani was held up for me to see and I couldn’t believe I was looking at my own daughter. She was beautiful and seemed completely okay to me. She let out a big cry. And it seemed within seconds I had somebody asking us, is your husband staying with you or coming with your baby? I told Sharmin (my husband) that I was fine! Go with our baby. For the next day or so I only saw her three times. My husband became the primary parent, signing forms of consent, relaying information to me in my recovery room and sitting with her, holding her hands for hours on end.
I still don’t quite remember the next few days. I think it was such a traumatic time, my body has locked it away from me. We were told she had a strange rash, severe jaundice and incredibly low platelets to the point where her heel pricks would take 45 minutes to stop bleeding, with my husband putting pressure on her foot with a cotton pad. They still weren’t sure what was affecting her but said they needed to get umbilical lines in her to be able to administer medication and also take blood without causing bleeds. This is a very tricky procedure and one they didn’t feel confident to complete and we were told Kiani needed to be transferred to Waikato NICU.
I was devastated. Having just had major surgery I was still an inpatient and needed to stay in hospital. The staff were amazing and tried everything possible to get me transferred to Waikato hospital also. But Kiani was in urgent need, so had to be transferred immediately. My husband travelled behind her as she had to go in an ambulance as the weather was too bad for a helicopter. They left and I was alone, without my daughter, in the hospital. Thankfully they let my mum stay in the hospital with me for the night and organised a plane ride for me to be transferred the next day to Waikato. It was such a hard night to be without my new little family. Adjusting to all the regular things new mum’s must do, like beginning to express, massive changes in hormones and the strangeness of not being pregnant anymore. And piled on top were all the things I’d never wish on any other parent, being alone without your child, not knowing about their wellbeing, recovering from a huge surgery, the bleeding, the pain and the dependency on others to do the most basic things.
The next day I said goodbye to my Taranaki family with plans to meet them in Waikato and got wheeled to an ambulance and taken to the airport to board my flight. I rolled up a towel and stuffed it under my seatbelt to help take away any small amount of pain as I was in for a rough flight. Finally arriving at Waikato hospital I was able to see my husband and daughter again.
This part I really don’t remember much of. My poor husband had been left alone with all of this terrible information dumped onto him and no one to help him make sense of it. We were told Kiani most likely had something called congenital CMV. A common virus, much like a cold which affects most of the population. I had never ever heard of this virus. It was explained that most children or toddlers pick it up at daycare and it’s not really too much of a worry. Because I work in an early childhood setting I was at a higher risk for contracting it. Passing CMV on to your baby can cause absolutely no issues at all. In most cases babies would not even be tested for congenital CMV as they would have no symptoms. It can however cause a lot of different issues. Seizures, jaundice, microcephaly, low platelets, premature birth, low birth weight, a purple rash, liver disease, enlarged spleen, hearing loss and developmental delays. All of these happened to Kiani. Every single symptom happened to my baby. She begun to have seizures in Waikato, her jaundice was caused by severe liver disease, her liver and spleen so enlarged they took up most of the space in her torso, such low platelets she could hardly clot her own blood, a rash and she was born at 5.7 pounds and her head very small. The knowledge that I had given Kiani this virus was devastating, that even though I know it’s not my ‘fault’ it’s still something that I gave to her, that did this to her tiny body. I still struggle with that today.
After about a day in Waikato hospital, during a routine check up they noticed her nose had begun to bleed and commenced an ultrasound on her head. It was discovered she had a bleed in her brain and as she was unable to clot that, it continued until the swelling was so huge that the pressure on her brain made the bleeding stop. Within a few hours we were transferred to Auckland hospital for emergency surgery to relieve the pressure. Again I was separated from my husband and child. They flew in the helicopter together while I pushed to be discharged so my mum could drive me to Auckland. I met Kiani and Sharmin there (along with our parents and my sister who all made the drive to support us) just as she was being prepped for surgery. The surgeon took Sharm and I into a room and explained what was about to happen. We were told her chances were not good. But if they didn’t do the surgery she didn’t have any chances. He explained how he was going to cut from her ear to the top of her head and asked if when they shaved her hair did we want it back? I couldn’t believe this was what our first week of being a parent was about. We had to say goodbye to our daughter and simply wait to see if she would make it.
Around midnight we were told she was back in her room and in recovery, the surgeon told us they had evacuated a big blood clot and that they couldn’t tell the amount of damage the bleed had done and wouldn’t be able to for a while. He prepared us and said she wouldn’t look very well and that we may want to wait to see her or take a minute to prepare ourselves. We didn’t, we just wanted to see our daughter and be there for her. So we went to see her. She had a huge wound from her earlobe up and over the top of her head. She also had a drain in just back from the surgery sight to allow for any excess blood. And so began her recovery.
The next day she showed us how much of a trooper she was and the drain was removed, as there was no excess blood. She opened her eyes once the swelling had gone down and began to give us small sleepy smiles and squeaks-the sweetest, most hopeful noises we have ever, and will ever hear. She slowly recovered from surgery, all while battling many other issues. The liver disease, seizures, the severe jaundice, and trying to confirm if her hearing and eyesight were okay. During the testing and a few MRIs we discovered she had also had a stroke, which resulted in brain damage. Our pile of struggles and unknowns grew. Her seizures stopped, the rash went away, the healing of her wound was amazing. Our trooper baby was really showing us how it was done! The nurses and doctors who cared for Kiani were fantastic, helpful and kind. They allowed us to be sad and overwhelmed when we needed it, gave us straight up medical answers when we asked for them and even joined in on some jokes when we were feeling in a lighter mood. But with ups then come downs again. Kiani had overcome surgery, had passed her hearing and eye tests, had been put on medication that was working for her seizures, and was slowly learning the first ‘normal’ newborn things, like listening to stories and having cuddles.
We then had a doctor come in and tell us, there is bad news. Her liver disease is so bad, there is nothing we can do for her. She either must repair her liver by herself, or unfortunately that is it. We might be travelling home without our daughter. I couldn’t believe it. After all we had been through, all her massive milestones, and hurdles that many of us wouldn’t face in a lifetime, that this was going to be the end of her life. Sharmin and I anxiously awaited every single blood test result. I remember my heart racing and feeling absolutely ill. A new doctor or nurse would come in and check results for us in the morning and they would sigh, and say things like wow this level is high. Sharmin and I would surprise them by asking for the exact number of the levels please. And there we have it. She was repairing her liver. The jaundice marker we were looking at was finally, if only a miniscule amount, coming down.
From that time onwards Kiani shattered our expectations. We began to look at flights to get us home to Taranaki Base Hospital and I found myself (along with extreme joy and relief) feeling almost sad to leave our amazing nurses and doctors, all the amazing staff at the Ronald McDonald house, and every other parent we had made friends with in the ward. I can never seem to find enough words to thank the staff that helped us on our journey. In Taranaki, Waikato or Auckland. They were all so supportive and really truly cared with all their hearts.
Finally the weather coincided with pilots, availability and the list of transfers and we were allowed back home. We made it to Taranaki Base Hospital where we stayed for another week to simply get Kiani’s bottle feeding developed. We learned how to administer all of her different medications: the anti-viral, the four different vitamins and the anti-seizure. And on the eve of the August 2021 lockdown we were allowed home. This was only possible through the incredible nurses in the neonatal unit, who at the drop of a hat raced about organising and notifying and helping us to make sure we were equipped and ready to go home.
Being home was amazing. We loved to do all those things that we would have taken for granted. The fact I could change her nappies without having wires to work around. When I could hold her without fear of knocking brain monitoring wires out of her scalp. Even when we began to loosen her overnight feeding schedule to allow her to demand feed and she would cry to wake us up, I was just happy to hear her voice. We had an amazing home care nurse visit us every week for months to measure and track and take blood tests, we had every type of follow up appointment you could imagine. She has surpassed all of our expectations.
Unfortunately we are not without struggles, we are expecting that she has developed quite bad hearing loss in at least one ear, and her brain damage has resulted in that part of her brain actually dying away and it will be impossible to know how this will present. But it’s nothing we don’t feel completely ready for. We are so grateful to have absolutely fantastic family support from all the parents, siblings, grandparents, aunt, uncle’s, cousins, even our friends, they have accepted Kianis needs like they wouldn’t have her any other way.
We cannot thank the NICU, SCBU and Little Miracles Trust staff enough. It’s definitely something you just wouldn’t understand to the full extent unless you are immersed in it, just how outstanding these employees are. I tried many times to explain to them the magnitude of what a gift they have given me and my family and they always say it’s our job we are happy to do it. These staff members are truly gems and we will always always be grateful. I look forward to our future as a little family, and I’m excited to see where her life takes her.
***** Thanks so much for sharing *****
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
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- 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.
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