Jay Mac Ritchie.
18 July – 2 September 2021.
Jay’s journey.
Our baby Jay was named after the Toronto Blue Jays baseball team and the blue jay bird. Like a blue jay, his hair was long, flowing, gorgeous and unique.
Our baby Jay was unique for another reason. He was born with a very rare genetic disorder. In pregnancy we never fully knew his prognosis. Once he was born we were confronted with the heartbreaking reality that he wouldn’t live past being a baby. Jay died at 6.5 weeks old. Jay gave life everything he had – against all the odds and with massive challenges.
Jay’s life was one wild ride – with some even wilder hairdos!
In Sarah’s words, this is Jay’s journey…
TRIGGER WARNING
This page goes into great detail about our trauma. Expressing what we’ve been through takes the weight off our shoulders and is a really important part of our recovery. We dealt with loads of medical professionals through Jay’s journey – this meant it became normal for us to talk about intense things. This is why we’re comfortable talking about it now.
If you feel triggered or impacted by what is discussed we encourage you to stop reading.
If you need to talk with someone please call the free number 1737 to speak to a trained counsellor for free.
Our Christmas miracle.
Two weeks after being advised we’d had a miscarriage we found out our baby was in fact ALIVE with a healthy heartbeat! A misdiagnosed miscarriage was just the start of the incompetencies in our care but at that time we were just so happy to be pregnant!!
For the longest time we thought that Jay might be a girl.
We named her Jasmine Star.
Andrew said he’d put ‘Jasmine Super Star Ritchie’ on her birth certificate.
We couldn’t wait to meet her.
Those first four months were the best.
The absolute best. We were excited about everything.
We were so excited about having a baby we even talked about how we weren’t going to complain about getting up in the night to care for them.
We were excited about our cat Willow meeting the baby – she hadn’t met a baby before!
We were excited about buying loads of woolen clothes – In the most bright, beautiful colours and patterns!
I started knitting a colourful woollen blanket to keep our winter baby toasty warm!
We had never been so happy.
Father and son.
In the waiting room Cat Stevens’ ‘Father and son’ song came on. In that moment we just knew Jasmine was actually a BOY!!!
This was the 20 week scan.
Within the next hour we also found out there was something wrong.
This was the day our lives would change forever – ripped apart over many months – affecting everything from our mental health, jobs, relationships, to trust in medical professionals. We would also end up moving out of our house - a home that would become frozen in time. A home full of all our broken dreams.
At this scan they found out Jay was tiny. Not small, TINY. He was below the first percentile and stayed there the whole pregnancy – growing on his own tiny growth curve. It wasn’t a case of him being naturally small or me needing to eat more to make him grow – there was something fundamentally wrong with him.
Babies like Jay usually have either a genetic condition and/or a problem with their placenta.
Babies like Jay usually don’t usually survive pregnancy.
Babies like Jay are VERY rare.
This was the last day we were filled with excitement for ultrasounds.
Hotel Life.
Jay could be one of the few babies EVER with this genetic condition (we’re waiting on confirmation on this). This means our pregnancy was a one in a billion+ too.
Every week, over a long period of time, Jay’s movements reduced.
At the end of pregnancy Jay wouldn’t move for 10-12 hours at a time, never kicked and still measured below the first percentile. When he did move, his movements were in slow motion – it felt like he was dying or about to die.
We needed extra monitoring as a result.
We dropped everything – we chose to move into a hotel across from Wellington Hospital. I knew this is what I needed to do – that if things declined further it could be picked up quickly and Jay could be saved.
Hotel life wasn’t as glamorous as it sounds. The highlight of my days included receiving fresh towels and linen (I did love this!). The rest of the time I was frightened for Jay’s life. I distracted myself by doing art, playing Jay the ukelele and eating. A lot. It made zero impact on Jay’s growth and development.
I also counted down the hours until Andrew finished work.
Being around Andrew made me feel calm.
Hotel life then turned into Hospital life.
I was in the hospital about three weeks before Jay was born.
Through some miracle, we got to 36 weeks.
My shoes.
I wished people could have lived in my shoes, then they’d understand.
I’ve never met anyone with a pregnancy experience like mine. What it was like carrying a Treasure Baby – what it feels like physically, what it feels like emotionally, what I put up with.
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My pregnancy was very rare.
While it felt like Jay was dying, in all the monitoring he always, always had a strong heartbeat and passed CTGs (heart and movement tests). I have theories about why. His vitals were actually really good. My health was really good. But there were ongoing major concerns from his ultrasounds – always under that unbelievable first percentile, among other things. The results were a totally mixed bag. The doctors were actually doing the right thing by leaving him in as long as possible. I wanted this too but it meant I just had to ride it out.
Ride it out, feeling the movements reduce every week.
Ride it out, even though it felt like Jay was dying with slow motion movements.
Ride it out, knowing he was a high risk of being stillborn.
The extra monitoring helped me know he was alive.
If his vitals suddenly declined then he’d be taken out.
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I experienced the WORST the maternity sector had to offer.
It wouldn’t have changed Jay’s prognosis – it just made things TEN TIMES harder.
I was let down by many people, organisations and medical professionals.
It was truly appalling.
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Crying about crying.
There were midwives who made me feel they were doing me the world’s biggest favour by providing extra monitoring. The ones that thought I was being an anxious first-time mum who didn’t know what movements felt like. The ones that described my stomach, and Jay, as odd.
After those appointments, I would go to the bathroom and CRY. I’d cry that maybe this was all my fault, maybe I had done something to cause this in Jay.
Maybe my baby was odd and deformed. How was I going to cope?
++++++
I cried at the confusion – how could the results be so mixed. I cried that some people were trying to convince me that what I was thinking, feeling and saying wasn’t true – so many saying that he’d probably be fine. I cried that our second LMC passed us over to a whole team of midwives once we had complications (a good call) BUT then we had no one overseeing us – no one calling us when results came in. I cried that results were being sent to our first LMC, who didn’t pass them on – despite me telling everyone our care had changed. I cried that the antenatal clinic midwife (who we didn’t know existed and who – luckily – was amazing) randomly called and said she’d found out about us and apologised we’d slipped through the cracks. I cried because ‘slipping through the cracks’ is not what you want to hear with a high risk pregnancy. I cried about turning up to discover an evaluation sheet on the table at my third pregnancy counseling appointment. I cried that there must have been something wrong with our baby’s brain – based on those reduced slow motion movements – yet was always told his brain looked normal. I cried at telling absolutely everyone that Andrew was a chef for ten years to prove to them (and myself) that I was eating well and couldn’t have caused this. I cried (then laughed) when one midwife met Andrew and said “I hear you’re a chef! What type of food did you like to cook?” – his big moment to back me up, yet he replied, “I liked using the deep fryer”. I cried about the midwife that hugged me at 24 weeks pregnant and said my body had “done so well to hold this baby so long” because he was so tiny. I cried that this made me feel petrified that I could have a stillbirth any moment. I cried that my stomach felt like a ticking time bomb with an ABSOLUTE TRAIN WRECK going on around it. I cried that Jay’s ultrasound reports always stated ‘movements visualised’ but I desperately wanted it to say ‘slow motion movements’ – maybe then people would understand me more. I cried that my friends and family were being so kind – giving us money, meals, gifts – yet I was withdrawing because it was becoming more difficult explaining everything. I cried that I had to break the news to Andrew that our situation was way, way more serious than doctors and midwives were letting on – or even knew themselves – due to how very rare everything was and what I could feel physically. I cried watching Andrew cry. I cried that I qualified for a pregnancy benefit but got declined because of how much Andrew earned. I cried that Andrew was the only person in the world I could fully rely on. I cried thinking about that awful midwife who stood over me in my hospital bed wanting me to explain why I thought my baby was like this, even though she had read my notes. I cried remembering her interrogating me with questions then writing my answers down on a piece of paper. I cried remembering how she looked into my grocery bag, as if somehow me eating a Tim Tam was making my baby worse. Her judgmental manner was strikingly different from most. I cried about how perceptive I am - I could tell those who were kind to their core and those who weren’t. I cried that my first LMC told me my baby’s bloods for the first genetic tests were discarded – even just reading that word ‘discarded’ in a text message pierced right through me. To think that such throwaway words were used about something so important – about my baby. I cried that I then found out months later that they HADN’T been discarded! I cried that I was told early on I had a miscarriage (based on my description alone) and then told “if you’re still bleeding in two weeks come in” – yet was offered no blood test to confirm. I cried that I grieved for my baby when he was actually still ALIVE with a strong heartbeat. I cried that I was so unbelievably let down by my local care that I wanted to move into Wellington permanently.
I cried that all I wanted to focus on was my baby, yet I was dealing with so much other shit.
I cried about not trusting medical people.
I cried that I needed medical people now, more than ever.
I needed to talk to a counsellor – CLEARLY – to help me process all of this. Even then I was let down. Counsellors who didn’t return my calls or forget appointments. I’d cry about that. Then I would cry about crying. The guilt of crying. Then I’d feel guilty about crying in front of Andrew. Not wanting to ruin his life any more than it was.
++++++
THIS turned into THAT.
THIS was what I put up with.
THIS was the headspace of a woman with a one in a billion + pregnancy.
THIS is why I wanted Hotel Life – so I could focus on relaxation and Jay’s wellbeing – being close to the hospital if things deteriorated brought comfort.
THIS experience shook me to my core – then gave me an unbelievable STRENGTH.
THAT was when I learned to advocate for Jay.
++++++
Resilience and bravery.
I wrote complaint letters then gave up.
My focus was on Jay and I wasn’t going to distract myself anymore.
I then began prepping myself to have zero tolerance for anyone who was going to let us down, think of me as just another anxious mother, or that my baby was odd – ever again.
I couldn’t deal with people who were that incompetent.
I wasn’t going to put my baby’s life in the hands of people that incompetent.
I turned my energy into getting Jay the best care possible.
At every single stage.
No matter what.
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Luckily, I also experienced the BEST the sector had to offer!
The legends of the maternity sector.
The doctors and midwives who were incredibly kind.
For every one bad experience, I seemed to then have five good ones.
The people who showed respect towards us and – most importantly – towards Jay.
The ones trying to support us through it. There was the doctor who would spend extra time with us purely so we could ask him the same questions over again – never once did he make us feel like we were overreacting. There were the medical people who I could see in their eyes how much they cared. Sometimes those eyes filling with subtle tears for us. There was nothing they could do though – no cure, no medication to fix our baby. They empathised with what we were going through. I’m grateful for those people. There was the midwife who stayed late to give me extra monitoring, so I didn’t have to deal with a new midwife and explain everything. Because she knew I wanted and needed consistency of care. Then there was Andrew by my side through absolutely everything – so protective and caring. In hospital, he would try and visit me before work – even hopping into my tiny hospital bed to hold me and give me my strength for the day. He cared for me and our baby so much, to the point I remember him asking our specialist if he should get me a wheelchair after a routine steroid shot! Andrew also, somehow, made me feel like when I did the most simple things they were enough to make up for how insane our life was becoming – surprising him at the bus stop after work or making him cards that I’d hide under his pillow. We managed to find small ways to enjoy our bizarre Hotel Life. When I was in hospital there was the kindness of strangers too – the two other patients I met, who are now my friends, who also had complicated and high-risk pregnancies. They totally got it – I didn’t even need to explain, they just knew and understood. I could empathise with them too. There was the ex-patient who delivered a bunch of flowers to the antenatal ward and said she wanted to give them to someone who needed them – apparently someone did that when she was there. The midwives chose me. The midwife who delivered those flowers and sat with me, held my hand, as I cried in that hospital bed. She said she could tell how much I loved my baby and reminded me that I didn’t do anything to cause this.
THESE were the people giving me my strength.
THESE people I could trust with my baby’s life.
THESE are the legends of the maternity sector.
Then there was the counselor who would call me on her days off.
Out of the kindest of her heart.
Because she cared.
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Living out of bags.
When we left for Hotel Life we never planned for it to be as long as it was. Andrew made a couple of trips back to get stuff over the weeks and to visit our beloved cat, Willow.
I only packed one pair of shoes – the ones I was wearing the day we left.
For the rest of the pregnancy, I wore my hot pink sneakers every day.
Cherub’s Cove.
Days before our scheduled c-section we decided to write letters to Jay – one from each of us. In them, we begged Jay to keep fighting. We said if he really couldn’t, we’d have to understand. And that we loved him so much.
I also said sorry to him for all the monitoring and for just everything.
We then decided to take some pregnancy photos – the last ones of the pregnancy.
We also knew they could be some of the only photos of us as a family.
We found a little bay on the south coast.
We named it ‘Cherub’s Cove’, for Jay.
We knew it would always be a special place for us.
Emergency c-section.
As soon as Jay came out, I went under, and Andrew was pushed out of the room. In an instant the three of us were separated. The baby I’d fought so fiercely to protect was away from me now – his life in the hands of a team of baby specialists.
The umbilical cord was wrapped around his neck 3-4 times and it took awhile to revive him.
My experience of having a newborn wasn’t filled with visitors and flowers. In those first few days it was filled with intense medical talks and barely seeing Jay.
In Jay’s first 12 hours I was visited at my hospital bed by five different doctors - luckily they were really kind - some we knew, some we didn’t. They all talked about his complications. Complications that were not picked up in ultrasounds. I didn’t really react. I instinctively knew it would be this bad.
I finally knew the reason for his slow motion movements.
I finally knew why Jay wouldn’t move for 10 hours straight. Every day.
I was more shocked Jay was ALIVE than shocked by his complications.
Jay was an absolute miracle to me – and an absolute medical mystery (though Andrew told me to stop saying this to doctors who specialise in this area!).
I was intuitive about Jay.
A lot of my theories about Jay would turn out to be true.
I was desperate to get to know him.
Jay was resilient.
My life became the ultimate trigger warning.
I quickly learned not everyone could handle what I was going through.
My life and what we were going through made people uncomfortable. It made ME uncomfortable. The thing with living an actual ‘trigger warning’ life is no one trigger warns you before the most unimaginable things happen. You have no choice but to deal with it.
I had to figure out who could and who couldn’t handle our updates – how much or little information to share. I had to figure out how to deal with their responses - the endless questions, the feedback.
This was better than dealing with the people who said nothing to me though.
Learning to care for Jay.
We were now on a new journey. The NICU journey.
“Do you notice that every time we get to NICU they put us to work?”. We laugh about this now, as we were his parents so doing ‘cares’ was a natural part of what new parents do! Any NICU parent knows ‘cares’ are a big deal – a set routine for nappy changes and caring for your baby.
It felt like we needed a medical degree just to change Jay’s nappy!
Jay was a high needs baby. On a good day he would literally sleep through his cares, enjoy hand hugs, and it was enjoyable for everyone. On a bad day ‘cares’ were really unsettling for him, and us – his heart rate absolutely skyrocketing from the slightest movement.
In those early days Jay seemed to be in the intensive care part of intensive care! Once on a regular doctor’s round I counted EIGHT doctors around him. Reading Jay’s Plunket book was a sobering moment too - in his first minute of life he had an Apgar score of ZERO.
Back then I didn’t interact with his doctors and nurses much.
I just focused on Jay.
I didn’t know it then but these people were soon to become Jay’s family.
Jay’s NICU family.
They were also soon going to heal me from my pain too.
In those first few days, Andrew had to physically look after me. He held me in the shower when I was too weak to stand due to blood loss. He pushed the emergency button when I fainted. He woke me when I kept sleeping through my alarms – I couldn’t hear them I was so exhausted – the alarms that were reminding me to express milk.
Andrew helped get my strength back up.
Andrew helped me bond with Jay.
Andrew is the reason I got through this.
I then used every ounce of willpower to push past what I was going through – all while processing having a baby with disabilities – at times shutting down my emotions, so I could be present.
The tears I cried in pregnancy had dried up.
I was in survival mode now.
I’d come too far to crumble.
Ringing in my ears.
The sound of emergency bells forever etched in my memory.
I remember walking through the doors at NICU and hearing the emergency bells going off. Instinctively knowing they were for Jay. Knowing that they were almost always for Jay. I was torn between rushing to him or going through NICU protocol and washing my hands first. I chose to wash my hands. I chose to give myself a moment’s respite before walking into the unknown, again.
I hoped by the time I finished washing my hands all the doctors and nurses would have left and he would be breathing on his own again.
Jay was brave.
The hair. OMG the hair!
Jay had the most amazing hair. His hair always looked as if it was blowing in the wind, like a blue jay. Parts of his hair actually felt like the soft part of feathers.
Jay had three hairstyles – slicked back, spikey, or completely disheveled.
Jay’s favourite thing was his hair being brushed with his pink soft-bristled hairbrush. We knew he loved it as we could see on the monitors how it would bring his heart rate down. Nurses would even use it as a tool to calm him down.
I remember in ultrasounds actually being able to see his HAIR!!! I couldn’t believe it. I’d never heard of hair showing up on an ultrasound before.
His hair was one of the first things they told me about when I woke up from the anesthetic.
A memory from that night that I do cherish.
Jay’s hair was truly magical.
Mr Zen.
Jay was cute. And funny. We would all laugh about his cuteness!
Jay rarely wore hats so when he did it was adorable. His wild hair still managing to poke through. When he wore hats it made us focus more on those sweet cheeks!
Jay’s biggest struggle was his brain forgetting to tell him to breathe. These events were sudden and major. However, 95% of the time Jay was actually a really calm breather and a peaceful baby. I actually felt like the reason his brain would forget to tell him to breathe was because he was SO calm! His peaceful energy was quite mesmerising – that’s where his charisma came in.
Jay had many, many, many unique characteristics (anyone who met him will know what I mean!). And many, many, many nicknames. We called him Squeak Squeak because he would randomly make loud squeaky noises – like a high-pitched hiccup!
Jay enjoyed sucking on his feeding tube and when that was removed he enjoyed sucking on his bottom lip – this was something so characteristically Jay!
Jay’s challenges were intense and hard for everyone, but he always managed to create so much happiness and excitement around him too.
I’ll never forget the excitement when we saw his beautiful face for the first time.
He was five days old and they removed the thick tape across his nose which held his breathing tube in. His nurse was so excited to tell us, it was as if she was telling us we’d won Lotto! It actually felt like we HAD won Lotto – when we looked down at Jay he had the cutest face in the world!
There was also the nurse who surprised us by printing a Blue Jays logo to adorn his cot. Then our excitement as we shared with everyone that Jay was named after the Blue Jays AND his hair looked like the logo! All the excitement from everyone when the Blue Jays icecream cup cap fit his head perfectly!
There was the excitement that, despite all his challenges, within days Jay graduated from his incubator and into a cot – because he could regulate his own temperature! There was excitement from a doctor who came up to us just to tell us how cool Jay’s hair was AND that it looked like the Blue Jay’s logo!!
There was excitement the day we turned up to NICU and Jay was…..wearing clothes! It actually gave us a fright because we weren’t expecting that and it was the cutest thing ever. He was wearing a teeny tiny woolen singlet – which turned out to be the first and last day he wore clothes – as he regulated his temperature so well he was always too hot for clothes after that!
There was the excitement when Jay would open his eyes on those rare occasions. Nurses would come up to us hours later saying they’d heard the news!! There was excitement from his physio that he could move some of his limbs and joints more than expected. Or everyone’s amazement at how Jay could lift his head up off the cot mattress without moving the rest of his body – no mean feat considering he had a short neck! There was excitement when I produced more and more milk every day and we brought in a larger bottle of it. The nurse said “congratulations!” and Andrew instinctively replied, “thank you!” (reflecting how exhausted we were!).
There was excitement when we’d all watch Jay learn to suckle milk from a small syringe. Or the laughing when Jay would nuzzle into Andrew’s chest looking for milk. There was no other excitement quite like when we bought Jay his pink soft-bristled hairbrush though.
His nurses weren’t being excited just for us – they were genuine.
We knew this because they were like this around Jay when we weren’t there.
So often we’d walk in to find nurses smiling as they brushed his hair or laughing at his cuteness as they spiked it up after a wash – with Jay lying there looking so content. There was also the nurse who would sit there with her laptop table pulled right up next to Jay’s cot – happily working away beside him. We’d laugh that if she was any closer she’d be IN his cot!
This is why Jay’s nurses became Jay’s family.
They helped lessen our heartbreak that he didn’t have his real family around him.
Jay had an energy about him.
Jay’s energy was infectious. That’s why he was popular.
This tiny baby had a large presence.
Jay brought everyone joy.
Spa day.
Jay was obsessed with pampering. This is no exaggeration. Jay was a sensory baby and that’s how we communicated with him. He loved having his hair brushed. He loved hand hugs to his head and body. He loved a full body massage with moisturiser. He loved his bubble baths.
Every day was spa day for Jay.
We’d have to spend hours leaning over his cot hand hugging his head or brushing his hair, he’d get unsettled when we stopped. Our backs would be killing us.
Jay smelt amazing too and I would instinctively smell his hair when holding him but his hair always smelled….TERRIBLE! It was because of all those lovely hand hugs he was getting all the time!!
Jay’s nurses loved pampering him too. One of them would roll up face cloths and cushion his feet with them in his cot. Like a little footrest!! It was the cutest thing. She’d also write us notes ‘from Jay’ about what he was up to during the night. We told Jay’s cousins about this and Ruby asked if it actually was Jay writing them.
We’d cushion his bath with layers of towels – as if he was sitting on a throne – and used an oxygen tube to create bubbles around his other sweet cheeks!
Jay really was TINY. He looked fragile yet he was actually so strong! If he didn’t want his temperature taken he’d lock his elbows down and we couldn’t budge them. In the bath though he would let us lift his arms up no problem!
Jay loved containment. We contained him with thin blankets wrapped around him. When lying on his side he’d usually have one main muslin between his arms that went down through his legs then high up his back. It looked like a candy cane. Andrew would say he was ‘riding his candy cane to dreamland’.
Like the Blue Jays logo, Jay had his Macdonald (Mac) tartan ribbon adorning his cot. Jay’s great grandmother, Bunny (Grace) Ritchie, was a neonatal nurse. Jay’s other great grandmother, Ophir Macdonald, was a midwife. The care of babies was in Jay’s heritage! Jay got and deserved the best.
Pampering brought Jay joy.
In his final days we lined his cot with a sheepskin with a white muslin over it.
It was as if he was floating on a fluffy cloud.
Radical acceptance.
There is nothing worse than false positivity.
The biggest thing that struck me was people’s obsession with assuming everything will turn out fine. Sometimes it doesn’t turn out fine. Sometimes there really isn’t a cure or anything you can do to change or improve your situation.
You can be as healthy as possible in pregnancy and still have a baby with a terminal condition.
You can have the best specialists in the world and still have a baby with a terminal condition.
You can recite endless positive affirmations and still have a baby with a terminal condition.
Fighting our reality was detrimental for me and really unhealthy. It added an extra layer of stress that I had to battle with. It took me away from being present with Jay and enjoying my time with him. I found people’s thoughts and opinions offensive at times. I needed people to LISTEN to what we were saying. ACKNOWLEDGE how bad it was. And then SUPPORT us through it. Everyone seemed to have a story of a baby that bet the odds or how NICU Wellington is the best – but no one can cure the incurable.
We tried every avenue in pregnancy and Jay’s life.
Once it was clear that there wasn’t anything anyone could do to change Jay’s prognosis, we had to radically accept the heartbreaking reality that he was only ever going to live as a baby. This was simply how Jay was created – the Jay we loved was also the Jay born with a terminal condition that included abnormalities. We radically accepted that too. Jay wouldn’t have been Jay without them. We loved every inch of Jay – from head to toe, he was perfect to us. Jay was still our baby, not a genetic condition.
A baby with a terminal condition can still reach their own milestones.
A baby with a terminal condition can still make their parents proud.
Jay can still be a NICU success story.
Making memories.
Two weeks before Jay passed away he was moved to his own room. Here he lived his absolute best days. This was when I discovered how popular he really was at NICU. Nurses would visit him who we hadn’t even met before – he knew more people than we did.
Once Jay had six nurses come visit within an hour!
It was heartwarming knowing he was surrounded by nothing but love.
Jay was surrounded by his favourite people 24/7.
One of Jay’s nurses surprised us by decorating the whole room in Jay’s cousins’ artwork. She even created a large family tree (with birds around it!) – so we could print photos of Jay’s family and have them close.
During those days we got to experience Jay’s true essence. His tubes were removed and the aggressive treatment changed to palliative care. Jay was free. He began to enjoy sucking on little syringes of milk, surrounded by music and his cousins’ art.
We would have small crowds of people gather to watch him in the bath or sucking his dummy – those same doctors and nurses who used to gather to save his life. Jay’s palliative care nurse was there too – all of us around him smiling.
I was so happy, yet so sad. I was so sad, yet so happy. That’s what it was like.
My favourite time at NICU was nighttime. It was so peaceful and Jay always seemed more peaceful too. In those moments I would feel so happy just holding him. I loved just holding him in that room. I stopped wearing those awful kangaroo cuddles hospital robes and wore my normal clothes. In those times I felt like a normal mum – not a high-intensity-NICU mum.
We told Jay’s nurses they could hold him when we weren’t there – we wanted him held as much as possible at this point. Walking in and seeing his nurses holding him were my proudest moments. I remember that feeling so vividly.
They would be sitting there with big beaming smiles.
Holding this baby we all loved.
My baby. My Treasure Baby!
Running for our lives.
The call we were dreading.
By this point, we really didn’t want to be away from NICU for long but we had to eat and sleep. We were back at the motel making dinner – onto our third accommodation at this point – just for a short break. My phone was charging in the other room. I went to check it and there was a missed call from NICU. NICU actually almost NEVER called us.
My heart sunk.
They would only call if there was an emergency.
They then called Andrew.
Jay was having some type of event.
We ran for our lives.
We ran down all those stairs. We ran across the road. As we ran I realised I didn’t have my mask. I yelled out to Andrew for him to run on without me. In a split second I remembered there was a box of masks at the side entrance of the hospital (this was in the middle of lockdown). I ran there. I grabbed the box. There were….NO masks. No matter what, at every stage, everything that could go wrong for me, DID go wrong for me.
This was the moment I needed absolutely everything to go right.
I needed to be there when Jay died.
They got me a mask. I then ran up all those hospital stairs. I ran through the entrance of NICU. Adrenaline was pumping through my exhausted body and my lungs were killing me. One of Jay’s nurses saw me and got me through a side door so I could quickly get there. As I ran into the room they were passing Jay over to Andrew to hold.
We wanted Andrew to be holding Jay when he died – I carried Jay at the start of his life, Andrew would carry him at the end.
By the time I got there Jay was breathing normal again. Oxygen levels 100%.
We then quickly called the motel to check we’d turned the stove off.
In true Jay fashion it turned out this was NOT the moment he was going to die.
Even in palliative care, it was impossible to predict what would happen to him next.
Free bird…
On a sunny morning, the second day of spring, Jay passed away peacefully in his dad’s loving arms. It was just us with him in the room which was perfect.
Throughout the day Jay’s doctors and nurses came in to say their goodbyes. Some had tears in their eyes, some cried. They weren’t just saying goodbye to Jay, they were also saying goodbye to us too.
These incredible people were soon going to be out of our lives now too. These medical people who absolutely made up for my horrible pregnancy experiences.
Three months living on that same street had come to an end. We were now off to rebuild our fractured life – not knowing what our grief journey would bring.
Our bodies exhausted, our hearts broken.
Jay was cremated and buried at Makara Cemetry alongside my grandparents, Eileen and Morry Doyle. Jay will be forever getting hand hugs in their loving arms.
We’re forever changed by this journey.
Forever changed by our darling Jay Mac Ritchie.
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Update
JANUARY 2022. On 23 December 2021, nearly four months after Jay died, we were given confirmed news of an official genetic disorder. Our DNA had been tested and it was discovered that Jay’s condition was a very, very rare Autosomal Recessive condition. Essentially, we were both carriers/the combination of our particular genes was the cause of all of Jay’s disorder. This disorder is unable to be picked up in pregnancy.
Sadly, this disorder is a terminal condition and most babies don’t survive pregnancy or live very long after birth. Jay is the first baby in New Zealand to have had this condition and there are only around 10 recorded cases worldwide. Ever. It is likely Jay was the only baby in the world with that condition at the time. Jay really was a Treasure Baby!
This news has provided us with huge clarity and, in a way, a sense of closure - there was nothing Sarah could have done throughout the pregnancy to prevent what happened to Jay. We hope that the choices we made - from living in a hotel to pushing for extra monitoring - helped at least give Jay the best chance he could have.
We also found out that Sarah’s experience of pregnancy is indicative of this rare condition - reduced slow motion movements over a very long period of time. This helps explain some of why Sarah felt so misunderstood, frightened and alone at times in pregnancy.
In the time since writing this About page (in November 2021) we have reached out to medical professionals to reflect on our experiences, ask questions and hear from their perspectives about aspects of the management of our pregnancy. It’s been very healing doing this. We are solutions focused and we know that we needed to go through this process to help us in our ongoing healing. We hope by sharing with them about our experiences it also helps future pregnancies like ours.
We have also reached out to organisations that we feel let down by to express the impact this had on us at such a vulnerable time and we have offered solutions for the future.
All of these discussions have gone very well and we are impressed with what has come out of them.
We have made an effort to thank all the midwives, nurses and doctors who have been part of Jay’s journey. We have also received great feedback about ‘our survivial guide’ and we have offered to be of support if there is anything we can do to support their work in the future - from talking with parents navigating similar journeys to any advocacy work we can do.
Our love for Jay is ongoing and his journey continues, but through his parents now…
DONATE:
Jay’s memorial registry.
We have launched a Jay Mac memorial registry with donations going to The Neonatal Trust. We’re aiming to raise $5000 by the end of 2022! The Neonatal Trust does important work that has a huge impact on families navigating the NICU journey.
A huge thank you to everyone who helped Sarah raise $2,145 via her birthday registry in 2021.
