Picture this. 

Standing in our half-renovated kitchen. Dishes undone. Dinner beginning to be cooked, late as usual. Isaac arrived home and stood on the other side of the bench. He then dropped what was to become a bombshell. “There’s a mechanic job in the Chathams that they are looking for someone to do”. He then filled in blanks about a workmate filling in there at the moment and so on. 

But my mind had stopped. It was focused on one thing… 

Could we? Was it possible? 

It was only 6 months since my diaphragm was paralysed, and whilst I struggled, I didn’t need more medical care for a year with it. Could we? 

Actually, where is it? What temperature is it? What timezone is it? How many people live there? How much does it cost to fly there? 

The kids aren’t needing lots of medical care now days… Could we? 

I’d have no family there… And how do you order groceries? Could we? 

Is there internet there? Is there a house we can stay in? Whilst we don’t need to get ahead financially, will we not go backwards? Could we? 

And then I googled. 

Filling in a few blanks, dinner not yet cooked. “We could at least look at it?” I blurted out. 

And that was the beginning of the end. The end of Christchurch, the beginning of the Chatham Islands. The end of city, the beginning of rural. 

As weeks, then months passed, Isaac did a trial run and loved it. We renovated our half-finished house non-stop. I googled my heart out. We emailed and chatted to bosses, family and friends before we looked at each other and said we were doing this. And not 6 months on from the moment he mentioned “Chathams”, we arrived. 

I was 29 weeks pregnant and I’d been in hospital for a bit over a week. We knew he hadn’t been breach, we knew I’d dilated and we knew I’d been in labour but it’d stopped. But something now felt wrong.

I couldn’t describe quite what was wrong or what was happening… but it felt like something might be IN, well, the “birth canal”. The hospital midwife told me that it wasn’t and 30 minutes later the scan showed that no, it was actually his foot in there. It wasn’t my imagination in the slightest. I lay in bed after contacting my husband waiting with no idea what would come. 

Let me backtrack.

Here I was at 29 weeks exactly, waiting for the day my baby boy would be born. I’d gone into labour at 27+6 and they stopped my contractions. I still progressed to being fully dilated and having bulging membranes. Then, I just had to wait. I was told it’d be no more than two weeks max. Contractions carried on and off for days. I was having them persistently, but they didn’t come as often. 

An hour later…

I’d been moved downstairs in the birthing suite waiting to see what would happen. I was in labour again, not making a noise and just waiting. My amazing husband arrived and mentioned that he might be born on his Aunties birthday – 6 hours on. Taking a deep breath, I let him know that actually, I was up next for a c-section. My midwife stayed close, taking observations as needed, but generally just reassuring me. At 7:15pm, they transferred me to the theatre.

My midwife sat close. There was little she could do in this moment. This baby needed neonatal care. I needed the care of an obstetrician. But she could be there, to support me and let me know what was happening. She was the photographer with an incredible eye. She took photos I had no way of taking myself. And she showed me them as I lay.

 They had just used ice to check if I was numb and was having a catheter put in when they asked when I last peed. Thinking, I told them it was about two hours ago. The obstetrician quickly moved and checked me. Paperwork was placed aside as called out that she could feel a hand and a foot. It was all go as my waters had broken 

The Birth

At 7:50pm, 11 weeks early, my baby was born. My baby was alive at 3lb or 1345g and 39cm long. What more could I ask for? Within two hours, they’d delivered my first 2ml of milk to NICU and around 12am, I was taken down to meet my son. My son who had a tube down his throat to breathe, wires all over his chest and IV lines into his belly button. His foot is glowing with the pulse monitor and beeps are going off constantly. And yet, all I remember of trying to see him was holding my gown up over my boobs. That distraction actually kept me from remembering seeing him for the first time.

All I remember from my own mind is laying on the table, having my husband stand to watch my babe be born, finally hearing that minuscule cry and seeing the plastic bag he lay in when they came around with the incubator. Everything else, I’ve filled in with my medical records, talking to my midwife, my husband and anyone else who’d talk.

 Premature birth is so different from term birth. It’s medicalised and the connection between baby and mother is literally one of the least important aspects (especially for the medical team.) It’s so surreal and yet, in many ways, it really doesn’t matter what happened. The thing that matters is the baby, beautiful or admittedly a bit weird looking, who is your pride, joy and love. 

At about 6 months old, my girl started doing something my mom and I thought was odd. It was like she was “hiding” in our shoulders — darting her head down and pulling it back up quickly, but she wasn’t actually capable of understanding that game yet. My mom mentioned in passing, “It isn’t epilepsy, is it?” And then the Google search began. Yes – I know, you shouldn’t google, but let’s be honest… So many of us do. 

Within a few minutes, I saw videos that looked similar to what my daughter was doing. I wondered if it was “infantile spasms,” which is a severe form of epilepsy, or maybe atonic head drops. Or maybe, in the back of my head, I wondered if I was over-reacting. 

I was able to video episode after episode. It wasn’t hard, since she was potentially doing it hundreds of times each day. I headed off to our doctor to get it looked at. She told me she didn’t think it was anything, but having private medical insurance, she referred her to a neurologist just in case.

The neurologist appointment wasn’t going to be for another six weeks. Four weeks later after the doctor returned to New Zealand from vacation, I sent an email to the clinic with a video of what was happening to my daughter just in case they needed it.

Not long after — it took hours, not days — I got a phone call saying that the doctor would see my daughter. He’d referred her to be seen as quickly as possible. And a few hours later, I got this email:

“They look like drop attacks (Hannah, this is a kind of seizure). She needs an EEG.” She was gotten into the public hospital in the same week for an EEG and to be seen. 

It felt sort of fast, but I thought this is what probably happens for this kind of thing. But then when we saw her doctor, she mentioned that she’d rarely seen kids get in that quickly to neurology at the hospital. I had no idea.

We went in for an electroencephalogram (EEG), and I was a bit confused that they said they got what was needed even though she didn’t have an episode while hooked up. 

Two days later, we went in and saw the registrar who was under the neurologist. We talked through the family history and then towards the end of the appointment she hit us with it: Isabelle has epilepsy.

I had gone from feeling like a mom who had been overreacting to normal baby movements to feeling validated and confused. I just wanted to be over-reacting because the alternative… Well the alternative wasn’t what anyone wants. 

That night she had her first dose of the medicine. It was supposed to make her sleepy. Over the next week or so, she progressively got worse and worse at sleeping. She had more attacks, so we increased her dose three times. She was now pulling herself to stand up and hitting her head on things. I cried while buying a secondhand head thumper helmet to stop the ever-increasing bruises.

Months after my daughter’s diagnosis, she had an EEG to see what was happening. The neurologist came in the next morning and said, “Well, her brain activity is completely normal.”

No seizures, no abnormal waves when she had these attacks, no anything. It took days to fully understand and weeks to comprehend. I was no longer the mom of a child with epilepsy. I was the mom of an undiagnosed child with who knows what? Something, or nothing. 

The medication she’d been on wasn’t needed, so we slowly weaned her off over the next month as they can’t go off it overnight. A month later, we went back to the hospital for the review, and we found out she did have a genetic duplication. It was of unknown significance, so we had no idea what it meant — if anything — in the long run. Thankfully her MRI was “clear.” Her head drops had been reducing, and she was discharged shortly later.

I am the mom of a healthy, happy girl who stopped dropping her head at around 15 months old. She’s active. She’s “advanced.” She’s frustratingly vocal. She’s utterly amazing. Yet this journey is a part of who I am. It’s a part of her, too.

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Sharing your NICU story is a tricky one. I could go for the basic description.

My pregnancy had lots of bleeding. I went into labour at 27+6 weeks and gave birth at 29. He was in NICU for 9 weeks and then came home. He’s been amazing since he’s been home even though there’s medical issues and been delays. 

That’s the most commonly shared story you hear of right? That or the media story of “she’s been on oxygen since she can home after being born at 23 weeks”. The reality is that there is a hazy middle ground of it all. You can’t share every last detail of the NICU story – which includes the lead-up and being at home after. Some of that is too raw, too confronting, to boring. For me, that journey included surgery’s to get pregnant, infertility, questioning if I’d ever be a mum, and eventually, seeing that positive double line. You can’t share every moment of pregnancy. That included haemorrhages, leaking waters at 17 weeks. Thinking I’d lost him, time and time again.

Going into labour

Going into labour – or the birth or near birth experience for some – is nothing like labour at term. It’s anxiety filled, panic, blind faith in doctors and somehow – for me – the tension and struggle between anger at God and still trusting him.

It’s not remembering anything other than trying to hold a gown over your boobs as you peered over the edge of the bed awkwardly to see your ventilated son for the first time. I only remember the gown and boobs bit – the rest is just filled in with photos.

And then it begins

It’s pumping to the photo of a boy who look nothing like your child – but it still doesn’t count. It’s counting nappy weights and grams and oxygen percentages coming through CPAP. It’s knowing you have control over none of that. It’s knowing what an umbilical line is before you know his height. Seeing machines before you see your baby. Not knowing if you can kiss this child – Will it make them sick? It’s saying your name to a receptionist before you get to see your child. There is a doctor, a nurse controlling all these things and you have to work out how to be Mum.  

It’s stopping cuddling him at 4 weeks old because he kept stopping breathing when you cuddled him. It’s the hormones of a new mum, and the drama of having your number one love attached to wires, tubes and IV’s in an intensive care unit. It’s having to have a NICU story at all. And yet, it’s having it become normal. 

Life is medicalised

Then a time later they get to come home. And comes the waves of not knowing what to do, the same as getting home with a term baby. But things are medicalised. Your first thought when he’s screaming isn’t “he has a sore tummy”, it’s “Is his hernia strangulated?”. What if they don’t gain enough weight? Will we have to go back in? 

When he’s not rolling at so many months old, you start to question the rest of the development to ensure his development is on track. Because you were told that they don’t know how his development will go because of the brain damage he has. And it’s not being told about that until a discharge meeting at 7 weeks old.

It’s being when he’s two that you’ll be going along to a weekly program to help his development for about 10 weeks – just to catch him up. And it’s staying in that weekly program until he’s 5 and a half.  It’s all those things that aren’t normal. That aren’t usual. That take time for your head to comprehend, never mind accept. That take time out of your life to both process and actually do. 

All that time later 

And then, you realise years on that things aren’t quite as per normal, even now. Some aspects of development have been changed – probably for life. But how could they not be? Rather than being in a safe, warm dark environment that last trimester was spent on the outside. With beeps and alarms, lights and voices, touching and breathing machines. How could you not be changed? 

This is the stuff that is left with a NICU story for a family. It’s the stuff in the middle. Not the stuff so incredible that it demands media attention. It’s not the accomplishments shared so readily with Facebook. It’s not even the heart stopping challenges that require talking with a professional. It’s the day by day mental and physical differences from that of a ‘healthy, happy, normal’ term child that everyone so adores. It’s that stuff in the middle that changes lives.