A mother's raw story of struggle to get care for a child with a significant, unlabelled disability

Rachel Malcolm-Swindells fought for several years to get the help her family needed to care for Lauren, her daughter born with a significant, unlabelled disability. It was only when she needed help with an injury of her own that she discovered great chasms in care.

First person: By the time most of us are adults, we will have had at least one negative medical experience.

It might be an incident where you went to the doctor with a mystery ache or pain, a rash, or something that you knew just wasn't right, only to be brushed off. Maybe you just needed over-the-counter painkillers; maybe the symptoms were in your head; or worse, maybe they were something that "women just have to put up with".

Medical practice can be difficult, no doubt. For the vast majority of ailments, people in the field work in what they call treatment pathways; helping patients find a clear treatment and measurable improvement. A broken limb, an infection, a growth that must be removed: these have clear treatment pathways.

Usually, when we have a negative medical experience, it's because we are put on the wrong pathway, or we don't like it. We're left questioning our bodies, and the often mixed-up messages they send us. But what happens when something is clearly wrong - very wrong - but there is no pathway?

When my daughter Lauren was born prematurely, at 34 weeks gestation, she was initially labelled a "feeder grower" who just needed a bit of chub before she left the neo-natal unit. This label was wrong. Lauren had a syndrome without a name: something neurological and insidious that years of genetic testing would fail to identify, much less manage.

Nothing can prepare you for having a disabled child. Certainly not after having a first child who was textbook, who breathed and fed and cried in all the right ways, for all the right reasons.

But worse than the day-to-day reality of oxygen and tube-feeding and specialists and ambulance rides is the total lack of pathway - any sort of vision about how life could look, you know, liveable. And so, this is my war cry, my TED talk, my lived experience: here is the reality of survival with significant, unlabelled disability, without a pathway in sight.

A syndrome without a name

My daughter Lauren spent two-thirds of the first year of her life in hospital. Her "problem list", created as a summary so new junior doctors could get a quick overview, read as follows:

• Severe global developmental delay, hypotonia of unclear aetiology;
• Severe sensorineural hearing loss - cochlear implants December 2019;
• Severe gastrointestinal dysfunction - jejeunal feeds and gastrostomy venting;
• Severe scoliosis;
• Nystagmoid eye movement disorder;
• Born 34/40 weeks with IUGR following maternal PET. Episodes in NICU of lactic acidosis;
• Severe desaturation episodes with brief hypopnea - previously used BiPAP, however now using nasal prong oxygen overnight;
• Self-injurious behaviour with tongue with significant ulceration.

In plain language, Lauren had been born early because of my having pre-eclampsia. She struggled to breathe, feed and move, so had been given a port in her stomach where we could feed her through a tube, with a second opening for venting. She was deaf, and though she seemed alert and engaged with her eyes, they flickered in an unnerving way. She often stopped breathing for no physical reason, and bit her tongue with her teeth. And she often seemed to be in pain, though what from remained a mystery after many months.

No reason was ever found for any of these issues.

Doctors obviously focus on what is wrong or not going well, and thus this "problem list" neglects to mention just how alert and exuberant Lauren was, despite her global developmental delay. Her smile shone. In one video, where she is reacting to her brother being silly, her smile is so wide it looks as though her face will crack open at any moment. Although she never spoke, she babbled and regularly laughed so heartily that she choked on her own saliva and required suctioning.

Spending so much time in the hospital was excruciating - we were there more than we were home - but sometimes, Lauren at home wasn't much better. By far the most terrifying point on the problem list above is seven: desaturation episodes. It feels reductive to write that term, because it is so flippant and casual when compared to what the reality was: panic in my husband's drained face, my hands shaking as I called 111, Lauren, grey and lifeless, whilst the alarm - the one she never slept without - screamed and flashed terrifying numbers in our faces. This happened regularly - on average about once every two to three weeks. We never got used to it.

With no clear pathway or diagnosis, our family worked on getting by. I needed to return to work, but quite how I was going to do this became the question. The "package of care" the neo-natal unit put together when we were discharged consisted of carer support payments and a child disability allowance of $48 a week.

Because Lauren's condition was not the result of an accident, she was not eligible for ACC funding, and it quickly became apparent that it would be impossible for her to attend a regular daycare or kindy. Meeting other families in hospital and online opened our eyes to the hugely varied experiences of support, or lack thereof - almost always contingent on a diagnosis or element of their child's condition.

A child with a tracheotomy, for example, will automatically qualify for a night nurse. Parents from other parts of the country recommended time and again that we apply for something called individualised funding, where a disabled person or their family is allocated money that they can use flexibly, for hiring people or purchasing enabling equipment.

It seemed obvious, given her need, that Lauren should have individualised funding. However, our hospital social worker - the only person who could do this application - brushed this off, saying there was no way this would be approved without Lauren having a diagnosis. Besides, the social worker said, she was too young - despite there being no age criteria anywhere I could find in my futile research attempts.

Although Lauren did not have a diagnosis, she did have an army of specialists - so many that one registrar told me it was the longest list he'd seen in his career - and several over-worked therapists of different persuasions. Near the start of 2021, Lauren's physio told us about Conductive Education: a preschool that was also a therapeutic facility offering Riding for the Disabled, music therapy, physio, and - enticingly for us - hydrotherapy three times a week. Lauren loved water, and the physio thought this could be a useful therapeutic avenue. Located on the same campus as Kimi Ora special school, Conductive was basically a preschool for kids with special needs. We decided to visit.

I dutifully followed the Google Maps directions to the back streets of Naenae, Lower Hutt, whilst Lauren's monitor alarmed intermittently in the back seat. The streets were wide and empty. Lauren and I wound our way through the back of the school before arriving at a ramshackle box with a faded logo. Every space in the pot-holed carpark outside had a wheelchair disability sign. I took a deep breath.

Just getting inside proved difficult. With Lauren cradled in my left arm and her feeding pump crooked in my right hand index finger, I struggled to open the magnetic security gate. I staggered up a worn wooden ramp and around the corner. I found a door and caught the attention of the staff, which was just as well, as there was no way I could have opened it without their help. As I struggled through the narrow entranceway, it occurred to me that doing this trip in the rain, with Lauren's specialised buggy, feed, oxygen, monitor and nappy bag, would be extremely difficult.

If you ever want a reality check about how privileged you are, I strongly recommend visiting a special needs preschool.

Most of the children could not move around easily, like Lauren. Some were in standers; others were in specialised seating to support muscles and bones that didn't behave as they should. As they sat around a large table for morning tea, few were engaged; their eyes struggling to focus and pulling in different directions, their mouths open with the glazed look of a tired child struggling to manage their body. Cute bibs did little to soften the impression that these kids had high and complex needs. Having had a first child who had taught himself to ride a two-wheeler before his fourth birthday, the reality of what disability looked like en masse was extremely confronting. We were part of this club now.

The interior of Conductive serves as a metaphor for our experience of disability funding. There were a few shiny bits of equipment - a rainbow made of lights, a huge bathroom with many varieties of toileting aids - but most equipment was old and worn. The walls were brown. It felt damp. The mats' edges were threadbare.

Music therapy was conducted in a cupboard no bigger than a large wardrobe. And if the children's facilities were less than ideal, the staff ones were worse; out back, there was barely room to sit on a single couch next to a kettle and microwave. A large notice board featured photos of kids and cards from grateful parents, as well as a montage of orders of service from children's funerals.

I thought about the warm staffroom at the mid-decile college I worked at, with its oven, toasted sandwich makers, and coffee urn. It had never seemed particularly flash, but compared to Conductive it was positively luxurious.

Yet this discussion of material surroundings detracts from the reason we decided that Lauren would attend Conductive: the staff. There was almost a staff member for every child there. When Andor, the "Conductor", picked Lauren up, he instinctively knew how to hold her; something I'd only ever seen a physio manage to do first time. Lauren instantly calmed, as though she knew this was a person she could trust. One of my treasured photos shows Lauren laughing at Andor dancing - he is beaming at her while she stands in a stander; the light on her face, a picture of pure joy.

Lauren continued to be a frequent flyer at hospital, so whilst her attendance at Conductive was contingent on her health, it was certainly a light in our lives. I continued to agitate for support and individualised funding, by writing emails, making phone calls, and generally being antagonistic. But it became too much, and in mid-2021, during a particularly difficult admission to hospital, I had a breakdown.

As part of the fallout, I begged the hospital social worker to apply for individualised funding for Lauren. My rationale was that if the application was knocked back, I would take it up with our local MP. The social worker agreed, and made the application. When it was accepted without question, I didn't know whether to cry, scream, or both. What I did know was this: had the eligibility and application process been transparent, it would have certainly made our lives significantly easier much sooner.

We employed our incredible carer Alfie, and managed to actually pay him a decent wage. It made life immensely more liveable; we had finally found some sort of pathway, albeit years after we could have started down it.

To fast-forward a little, earlier this year - 2024 - I was diagnosed with chronic fatigue. The rheumatologist surmises this is due to the prolonged stress our family endured whilst caring for Lauren. Of course, the aetiology of this will never be known - and yet, at my core, I know this is what it was. The bureaucratic web of funding encapsulates more than the disabled; it encapsulates those that care for them, their health, and their wellbeing. It's more than a fight for money - it's a fight for life.

Communication (breakdown)

In December 2021, Lauren had a large autonomic event, meaning she very suddenly became so sick her internal organs began to shut down.

Again, in a pattern with which we were familiar, doctors do not know what caused it. We were told it was 50/50 whether she would live or die. Our family rallied, we cried and prayed, and Lauren pulled through. The consequences of managing Lauren post-event, though, were huge.

She now required significantly more medication to manage her pain, and her difficulties with maintaining her temperature increased, sometimes requiring clothing and bedding changes every half-hour. We realised that to take Lauren home would require significantly more support, and the team at the hospital agreed.

An application was made for night nursing; Lauren's condition was particularly difficult to manage overnight, with the nursing staff on the ward fully supporting us. In February 2022, the application was approved in principle - then nothing happened. At this point, we had already been in hospital for three months.

The early months of 2022 were a significant time in New Zealand's health history, and Lauren's life overlapped with the Covid-19 pandemic. In March 2022 the "Wellington peak" hit, and our son soon brought Covid home from school. Despite government mandates to isolate at home, the hospital demanded that we come into hospital and help care for Lauren because, as they explained, her needs were too high for the nurses to manage without our assistance. I strongly suspect that had Lauren been an oncology patient, we would not have been asked to do this.

In desperation, I wrote to Anusha Bradley, an RNZ reporter, introducing Lauren and the situation. This was an action I had contemplated before when dealing with various NASCs, but previously the threat of media coverage had been enough to precipitate a response. However, after three months in hospital, and no end in sight, I was enraged. I needed to forge a pathway. Reading back the email that I wrote to Anusha now, I do not know how I managed to be so measured. I was bone-crushingly tired. I was in despair. There was no pathway; we were stuck in hospital purgatory.

Anusha emailed back. She wanted to do a story. We spoke on the phone multiple times, and had an extensive email trail where I poured my heart and Lauren's story out. Within two days of Anusha's enquiries at the hospital, we suddenly had traction. Somehow, there were now nurses available. They were going to be at our house. During the night. We could sleep, and perhaps even exhale.

We never got a real explanation about why it had taken so long, aside from the hospital issuing a statement to the media that there had been a "communication gap". I am still unsure exactly where this gap was, but what I do know is that it cost our family time together - months that we will never get back.

I am realistic about why our story got attention: I am bolshy and articulate, and Lauren was adorable and complex. It tugs at the heartstrings. But these should not be prerequisites for a pathway. The need should determine the level of support, not the diagnosis, or the ability to email the right people using capital letters in the right places.

The few months we had with night nurses were some of the best of Lauren's life. My husband and I could now switch off for eight hours during the night, five days a week. The days were still intensely difficult, and Lauren still spent more time in hospital than home, but the increased support made engaging in the pursuit of life possible.

Lauren passed away from complications from a UTI in October 2022. She was three years and seven months old. At her funeral, a huge contingent from the hospital attended. Ironically, we were told we had caused a staffing crisis that afternoon.

I told myself that we had done our best with the resources we had, and I still think that is true. I also told myself that health systems are expensive and complex, and we probably got the best care that was possible at the time.

At least, I believed that until recently.

Head knock

In March 2024, 18 months after Lauren's death, I had an accident at work: I managed to hit myself between the eyes with a rākau stick whilst bending down to pick up my keys. I saw stars, had a headache, and was generally embarrassed, but otherwise brushed it off. It was 48 hours later that I really went downhill, and then to the GP; I could barely stay awake and was slurring my words. I was concussed, with whiplash to boot. After a difficult couple of weeks, I was referred to the concussion service, a service that before my accident I had no idea existed.

A specialist nurse contacted me the following day. Seeing her in person several days later (days!) was shocking: the service had a specialist rehabilitation service in a new, standalone building. As I drove into the car park, it was a world away from the potholed Conductive facility in Naenae. This was new asphalt, smooth under the tires. It was warm, light and modern, built for purpose beside the local community hospital. The entrance was accessible, and going inside, it smelled clean and fresh. There may have been a pot plant. The staff were pleasant and unfrazzled, as though their workload was actually reasonable.

The nurse and I spent an hour together, and she was incredibly helpful. There were guidelines! Multiple referral pathways! A shiny brochure that contained helpful information! In that session alone I was referred to a physio, an occupational therapist, and a neurologist who I saw less than a week later. To say this was mind-blowing is perhaps a cliché, but after having such a different experience in the health system with Lauren, to have such traction and impetus was both immeasurably helpful and deeply infuriating. Because the core difference - as it so often is - was money. My concussion was covered by ACC, whereas Lauren's condition - her syndrome without a name - was not.

On one occasion at the concussion service facility, I noticed an infographic poster with statistics. One caught my attention: the under-18 users of the service were 100 per cent male. Perhaps not all of those concussions were rugby-based, but if I were a betting person, I'd bet they made up a significant portion. In the over-18 demographic, men still made up the majority, being twice as likely as women to sustain a concussion. As I sat in my dizzy, headachy state, I pondered how many concussions were the result of doing an activity with some risk, an activity the person had chosen to do.

Of course, a concussion has a reasonably clear pathway of treatment. It is no-one's fault that Lauren's condition lacked any known pathway at all, but it is still remarkable - given her clear level of medical complexity and high needs disability - that so little help was available, and what assistance there was required such a fight.

I do not begrudge the concussion service. On the contrary, I am incredibly grateful for it. It took a good three months for me to get back to baseline, and having such prompt assistance eased the burden of trying to keep '"doing life" with a concussion. However, this level of service - this timely, proactive, accessible, appropriate, well-funded service - should be the standard of care extended to all our most vulnerable, not just those who are covered by ACC, or those whose pathways are clear. The need should determine the service.

The gap between Lauren's "package of care" and my experience with the concussion service is so large that I still feel it can't be real. It's not only the gap between ACC and those who do not qualify: it's the gap between those that have discovered the "why" and those that haven't. Ultimately, it is a question of whether our country finds it acceptable that those who suffer a head-knock get first-class treatment, whilst scores of disabled children are cared for by burned out and ill-equipped parents, attending dilapidated, damp, inaccessible preschools and waiting months for appointments that may - or not - further their care.

Disability isn't sexy. You can't battle it, or fight it, or fix it - you just have to live with it. But being able to employ someone you trust to help you; having access to quality education, in appropriately equipped environments; seeing consultants and doctors without having to wait months, especially when pain is involved; being able to sleep; having a pathway, even if it's not clear exactly where you're going: these are the things that make a difference to individuals and their families.

Our kids deserve quality care - and that's all our kids, not just the ones who've had a head knock.

There's nothing about Lauren's absolutely vital person that I would change. But our experience of the system? Yes, I'd change that. Her pain? Yes, I'd change that too. And if I could go back to Lauren's birth? I would sidle up and whisper to the obstetrician: "Drop her. She'll get better care."