Lauren Malcolm-Swindells was kept in hospital for months, even though doctors said she didn't need to be there.
While there, her mother was asked to abandon Covid-19 isolation to nurse her because of short-staffing. Anusha Bradley hears how a DHB "communication gap," and a nursing shortage robbed the Malcolm-Swindells of their limited time with Lauren.
The toddler's tiny limbs jerk with every rasping cough and her face turns red as she tries to breathe. Large red digits on a screen next to her hospital cot tick downwards; the three-year-old's blood-oxygen levels are falling. Without missing a beat, her mother, Rachel Malcolm-Swindells, calmly reaches for an oxygen mask hanging on the wall and gently places it over Lauren's mouth with one hand, using the other to caress her small tummy as it heaves with the effort of coughing.
An alarm is triggered as Lauren's oxygen levels continue to drop and her paediatrician, who happens to be visiting, calls out the numbers to her mother as they fall. When the red digits hit 84, Malcolm-Swindells grabs a suction tool, leans over the cot and gently inserts it into her daughter's mouth. "Say ahh," she says as she lowers her smiling face towards Lauren's, looks her in the eye and opens her own mouth wide to show her exactly how it's done.
Lauren, who is profoundly deaf, complies and her mother extracts the mucus blocking her airways. Moments later, her coughing stops, her colour returns and the numbers on the screen tick upwards. Malcolm-Swindells hangs the mask back on the wall, turns, and gives another big smile to her daughter while tickling her tummy.
"Do you want to watch some Paddington on the iPad?" she asks.
Lauren has just experienced a "desaturation" event where her blood-oxygen level can fall dangerously low. On "a good day" this can happen half a dozen times when she's awake, but her condition worsens at night, so Lauren sleeps attached to oxygen and needs monitoring every half hour. When Lauren is unwell - as she is today, recovering from a bug - she might need suctioning "every five minutes for large chunks of the day" to keep her airways clear, Malcolm-Swindells explains.
Because of this and other medical complexities, Lauren suffers, she needs round the clock one-to-one nursing care.
Her parents, through necessity, are skilled in providing this thanks to Lauren's 53 admissions to Wellington Regional Hospital hospital since birth. Put another way, Lauren has spent two-thirds of her life there. Her longest stint out of hospital is just 40 days long.
Lauren's current stay is her longest - nearly five months now - but for most of it there's been no medical reason keeping her there.
Lauren's doctors wanted to discharge her three months ago, provided she had experienced in-home nursing care each night. But despite the DHB making funding available and endless letters and phone calls from both her parents and her medical team to arrange it, Lauren has been forced to remain in hospital.
Her parents are desperate to take her home because they're aware the clock is ticking. "We don't know how long we've got, we were told by our former paediatrician that Lauren probably wouldn't survive childhood, says Malcolm-Swindells.
"It's literally just that time together that we want. When Lauren's in hospital it's incredibly difficult for us to be a family all together."
The family home is up a winding road in the hills above Wellington, where a small red-headed boy stands at the door wearing a cheeky grin and holding a water gun. This is Fraser, Lauren's soon to be six-year-old brother and "easily her favourite person," says Malcolm-Swindells.
It's mid-afternoon and Malcolm-Swindells has just returned from the hospital where she's been looking after Lauren all morning. Now she's waiting to hear if either she or her partner Raymond will be needed to fill in on the night shift later.
The walls of their Lockwood home are adorned with photos: Lauren and Fraser as newborns; Lauren and Fraser face-to-face, laughing like they're sharing a joke; Rachel and Raymond at their wedding last year, holding both kids proudly.
Tucked off the lounge, in the master bedroom, the couple's bed is pushed into the corner to make room for Lauren's cot and all the medical equipment she'll need when she does come home.
"It's hard for us to be apart," says Malcolm-Swindells. And the family has spent a lot of time apart. The hospital's covid policy during the pandemic prevents Fraser from visiting his sister. Only when the rules were briefly relaxed around Christmas did they see each other and enjoy a disco with the doctors. They try to bring Lauren home for short visits as often as they can because she loves being home, says Malcolm-Swindells.
"When you pull into the drive, Lauren's face lights up. You bring her in here and she's squealing like she's so happy to be here."
But it doesn't happen nearly enough and so the family splits their lives between the hospital, home and work and hopes they can soon bring her home for good because then Lauren can have a good quality of life, says Malcolm-Swindells.
"There's lots of parts of Lauren's body that don't work very well, but there's lots of parts of her cognition that work just fine, and she knows where she is."
"She loves leaving the ward to go on a walk, she gets very excited. She loves helium balloons, she loves bubbles, she loves Fraser."
Lauren also loves swimming, which she does regularly at the special needs preschool she attends, Conductive Education. "She absolutely loves that, and she loves seeing other kids... she's a people person."
Although Lauren's nonverbal she finds ways of communicating. "She has very, very specific tastes about what she wants to watch on TV," Malcolm-Swindells says laughing. "She loves Paddington... but if Blaze [and the Monster Machines] comes on she'll have a little tanty, like, 'I don't want to watch this. What's this bollocks?"
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No one is really sure of Lauren's exact condition. She was born floppy and unresponsive at 34 weeks with an Apgar score of just one and spent the first four months of her life in Wellington's neonatal intensive care unit, where her condition confounded all the experts.
Low muscle tone and scoliosis mean she cannot sit up unaided and she is fed through a tube into part of her bowel because her stomach cannot digest food. Problems with her automatic nervous system cause her temperature to plummet dangerously low or spike feverishly high and her breathing to become erratic. She is on some "pretty heavy" medication for neuropathic pain and her condition worsens at night when she is prone to sleep apnea, Malcolm-Swindells says.
Extensive testing over the years has ruled out cerebral palsy, mitochondrial disease and other known disorders, which means her doctors have yet to give her a formal diagnosis. But the way her body functions is so unique her medical team have rewritten the paediatrics handbook in order to look after her says Lauren's paediatrician Dr Andrew Marshall, who is the Capital & Coast District Health Board clinical lead for child health.
"All the usual markers we use to tell us if she is sick or not, we can't really use on her.
"We've had to change the rules for Lauren because she would otherwise trigger a response from the intensive care service every day," Marshall says.
But intensive-level care is essentially what Lauren needs and when she is in hospital some of that care falls on her parents, even though they have no formal medical training.
"Her parents have learned the skills of an advanced nurse effectively... and they work in very close partnership and collaboration with our doctors and nurses on the ward," Marshall says.
Malcolm-Swindells has a slightly different take on the issue. Although both she and her husband will do anything to help Lauren, their skills in caring for her mean they're often called into the hospital to look after her when the ward is short-staffed. Even when Covid-19 struck her husband and son in March, she had to break their isolation bubble to look after her daughter.
"What we had wanted to do was just basically isolate away from Lauren, so Lauren didn't get Covid, and the hospital said, 'No, we need Rachel to come in because we can't cope without you," she says.
Malcolm-Swindells did this for five nights until she tested positive.
Then Lauren got Covid-19.
Malcolm-Swindells says it was frustrating, but none of the frustration is directed at any of the ward staff. "It's actually more about the allocation of resources around the hospital."
In a statement, Capital & Coast District Health Board director of provider services, Joy Farley, says the ward was experiencing "nursing gaps" due to staff with Covid-19.
"As is usual practice, there is an expectation that where possible a parent of younger patients stay overnight in the ward with their child. This expectation pre-dates the Covid-19 pandemic.
"On that night we requested that the patient's mother stay overnight so long as she had tested negative for Covid-19 - had she tested positive, we would not have made the request."
Strict infection prevention and controls means there was "no risk" to Lauren or others on the Ward, Farley says.
Lauren ended up coping with Covid-19 okay. "Two years ago she had a different coronavirus and we think, in hindsight, it acted as a kind of protective for her, like a vaccine. But the point is I felt that she was put at undue risk," Malcolm-Swindells says.
It was just another stress in a situation that is taking its toll. "My husband and I, who are both working, are trying to juggle work, our five-year-old and living between home and hospital.
"It is impossible and we are at breaking point."
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The situation came to a head when Lauren was admitted to hospital in early December after suffering what her doctors call a "major autonomic event" that caused damage to her brain.
She was given a 50-50 chance of surviving, Malcolm-Swindells says. "She did pull through that. She's an amazing little fighter."
It took Lauren about six weeks to recover and get close to her previous baseline. In early February she was stable enough that her doctors wanted to discharge her, but they "did not want to do so without night nursing care. Lauren's condition is particularly difficult to manage at night," Malcolm-Swindells says.
A referral was made to the Ministry of Health-contracted Needs Assessment Coordination Service [NSAC] which contacted the Duty Calls Nursing Bureau to see if they had the capacity and staff with the right skills to look after Lauren at home.
Malcolm-Swindells says she received a call from the DHB in February saying the funding "was good to go", but then nothing happened.
"We don't understand where the hold-up has been."
The hold-up is "frustrating" for all, says Lauren's doctor Andrew Marshall. "It's been frustrating for the family and frustrating for us, who are advocating for the family, at times, to put together that package. But I would also acknowledge it's really complex, it's a bespoke package that isn't a standard kind of thing."
After RNZ made inquiries, Capital & Coast District Health Board provided an answer: A bespoke funding package was created for Lauren but the nursing shortage, exacerbated by a "communications gap within our own internal processes" added to the delay, it says.
"The process of designing, funding, and implementing packages of care is complex and involves a number of teams and individuals within the DHB. The communication gap that occurred within these internal processes involved confusion over areas of responsibility that, for a short time, led to actions not being undertaken or progressed as they should have," Farley says in her statement.
The DHB is now reviewing its processes to ensure this doesn't happen again, Farley says, and has offered an apology to the Malcolm-Swindells.
"We recognise that, at times, this has been a frustrating and distressing experience. While this particular package of care is now ready to be implemented, we recognise the impact of delays on this patient and family and are sorry that this occurred."
The DHB says Lauren's funding package was agreed upon "in principle" in March, but the Duty Calls Nursing Bureau says they could not provide care sooner because it only received confirmation it had been approved on 12 April.
This, combined with a shortage of qualified nurses with the expertise to look after Lauren means she has waited longer than usual, it says in a statement.
"We have reached out to the family to apologise for any distress they may have experienced from this delay."
"The in-home support sector has been hugely impacted by the Covid-19 pandemic and the nurse's pay equity settlement negotiations. The combination of the vaccine mandates and the inequitable pay home-based nurses get compared to those employed by DHBs has exacerbated the serious staffing crisis in the home-based care sector.
"In addition to the requirement that a provider cannot start provision of care until NASC confirms the DHB funding, the impact on families needing support can be significant," it says.
Malcolm-Swindells says she hasn't received a personal apology from the DHB but hopes it will learn from the mistakes.
"It's been our experience with a disabled child that lots of things in the health system are siloed, but when you have a complex child it's so important that people are working together so everyone is on the same page."
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It has been a few days since RNZ began making enquiries - and Lauren's doctors escalated her case - and suddenly things are happening. Malcolm-Swindells learns two nurses have been recruited to look after Lauren at home.
Then, more good news: Five nights of care will be provided for Lauren, and this will increase to seven nights once more nurses are found.
It's Monday, 2 May, and Lauren's carer Alfie is home. Lauren is beaming as she arrives, making her way across the deck, the final steps home.
"What was really lovely was as soon as she saw Fraser she started looking around and following him with her eyes," Malcolm-Swindells says.
The family read a story together but Lauren isn't looking at the book, she's looking at Fraser.
"It's just so much nicer to be doing that stuff in your lounge," Malcolm-Swindells says.
At 10 pm, Lauren's night nurse takes over her care. She's on until 6 am, dealing with multiple desaturation events, lots of phlegm, and Lauren's high body temperature.
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The Malcolm-Swindells are now, finally, looking forward to spending more time as a family, doing all the things families enjoy.
"We might go for a walk in the pram. We might even do some really boring stuff like go to the supermarket, she loves the supermarket because she really likes lights and stuff.
"We're feeling really good about this. Having her with us means everything."
"I hope for Lauren to have sustained periods where she is out of the hospital and able to enjoy life. I want her to dig her feet in the sand. I want her to lie on the grass. I want her to see birthday balloons and be really excited and really happy," says her mum.
Having Lauren at home, even with night nurses, will be challenging, she says. "We have to start the process to work out what's going to work for her and work for us. And if nothing else... even when it's been really hard, having her overnight, it is really nice on a Sunday morning getting up and going, 'Oh, we're all here."
"I want her to be surrounded by her family and know that her family love her. That's what I want for Lauren."
RNZ
