This is Mya’s kidney journey told by Mum, Kathryn.
Mya was born on the 31st of May 2000 weighing in at 8lb13oz. After only two hours of labour and born in the hospital spa bath the birth went very well with no complications. She went through her toddler stages reaching all milestones as normal and besides a mild case of eczema she was as healthy as any other child.
At four years old Mya was an active, bubbly and energetic child who always loved to run and play and taught her younger brother how to climb anything and everything! She was definitely a bundle of energy!!
At five years old, she was super excited to go to school. Just the thought of being with her peers, dressed in her school uniform and being able to play on the playground was enough to entice Mya on her first day. She loved it! But within two weeks of starting school she became unwell.
We noticed that Mya had become very grizzly and lethargic and that her drinking had increased incredibly. We thought she had just worked up a thirst at times. She stopped playing and for a few days didn’t have the energy to get out of bed. It was during this time that we took Mya to our local doctor who said she had a urine infection. She was placed on some meds and sent home.
When she showed no sign of improvement, we started to worry and took her the Emergency Department at our local hospital. Again she was diagnosed as just having an infection of some sort and sent home.
Within 5 days Mya started to show signs of puffiness in the face, the hands and feet and by this time was in constant pain and not a happy little girl. She didn’t eat very much and was constantly thirsty. And we hadn’t even noticed that she was going to the loo to pee.
My husband, Richie, came home from work at lunch on this day and said, “I’ve made another appointment for Mya at the doctors. Something’s just not right.” He took us to the doctors to get another opinion. Again they said she had a “urine infection”.
Whilst waiting in the hall for our prescription to be written up, a nurse approached us after walking past Mya. She immediately stopped and sat by us asking what was wrong with Mya. We explained what we had been told by the doctor and she frowned. She whispered to us, “I think she has a Nephrotic problem” and said to get to the hospital immediately. She said, “if it’s what I think it is and a kidney issue, it’s very serious and not to wait.” She had seen a similar thing with another person and didn’t want Mya to go undiagnosed.
After receiving our prescription we took Mya straight to the Emergency Department where we explained to the nurse what we were told by the Nurse at our local doctors. We waited for about 20 minutes before a doctor came into see us. We had Mya lying on the bed next to us just chatting when the doctor came in; he didn’t say much but just looked at her. He left and then came back with two other doctors. They spoke amongst themselves and then left and then another two doctors came back in. We were a little surprised, as we’d been to the doctors and the Emergency Department at least 3 times that week but we’d never had this reception before.
They pulled Richie and me aside and said they needed to run some blood tests to find out what was wrong with Mya. They believed she may have had a kidney problem and they wanted to get tests done immediately.
Once the tests had been done they came back and sat us both down and said, “Mya is going into the ICU now, she has a blood pressure of 200 over?? (sorry I forget) and that she needed to be flown to Auckland’s Starship Hospital in Auckland (The Super Hospital in New Zealand). They said her kidneys were failing and that she would need a transplant.
Of course, Richie and I were both shocked. In a matter of hours she went from having a Urine Infection to requiring a transplant?! She was wheeled from Emergency to the ICU where catheters were put in, observation machines were taking results and we sat helpless watching our little unhappy girl.
Richie stayed at the hospital while I went home to organise our two sons to be cared for with their grandparents, Janet and Albie Tamatea. They agreed to watch the boys and to drive the 6 hour drive the next day to be with us. My parents, Sharon and Dick Puohotaua, decided they would drive up as soon as we left the hospital so we would have some support up in Auckland.
It all happened so quickly, she was wheeled into the small little plane with a team of nurses while Richie and I sat near the front with earmuffs on to muffle the loud noise of the plane. The trip seemed very quick as we cried most of the way there, mostly out of fear for Mya not for ourselves.
Once in Auckland about midnight, Mya was immediately taken into surgery where they put in a tenckhoff catheter which would be used for Peritoneal Dialysis or PD. It was 4.30am before we got to see her again. She was wrapped in the foil-like blanket to conserve heat and she was already draining fluid from the PD machine. She did not wake to our voices and was heavily sedated.
We were advised to try and get some sleep which of course any parent knows is very hard under the circumstances. We were overwhelmed with worry and concern and we had no indication during Mya’s childhood that this would have impacted our lives so much.
Mya dialysed for 24 hours for two weeks. She needed to remove as much fluid as they could to ensure her safety. She started to resemble her former little frame and face and we were pleased with her progress. She then dialysed for 12 hours every night from then on. After 5 weeks in hospital she was able to go home and go back to school. She was thrilled.
Upon her arrival back to school Richie and I asked her teacher if we could take the time to discuss why Mya had been absent and the repercussions it now had on Mya’s life. We showed them her tenckhoff in her tummy and the little holder it had to keep it tucked safely from harm. We explained the operation process and how she was no longer able to play as much due to fatigue.
They promised to help Mya if she needed it and to continue to encourage Mya to be active and continue to play! School was a great place for Mya – she was given special treatment and allowed to nap during the afternoon as she often got so tired.
During her first year Mya was referred to our local hospital for ongoing supervision. They would administer EPO injections twice weekly and oversee weekly blood tests to monitor her Tacrolimus levels. If anything was wrong she was immediately flown to Auckland as a precaution and her care was administered by the Paediatric Kidney specialists of New Zealand. Mya became a very frequent and confident flyer!
Mya had a 300ml daily fluid restriction which had to incorporate any food that would equate to a liquid – for example yoghurt, ice cream, ice blocks and ice. Everything needed to manage as the fluid that went in needed to be able to be taken off each night via PD! She was also told to restrict cheese, dairy, potatoes, bananas and any kind of fluid.
We, as her parents, learnt that she preferred to swallow whole tablets rather than regurgitate liquid form medicines, that having a fluid restriction was extremely harder to manage than we predicted and that the changing of her diet meant we all had to incorporate some changes. By this time Mya was wheeled everywhere in a pushchair to ensure her energy levels and to keep her comfortable as she slept often due to fatigue.
Mya’s illness affected us all as a family and was often harder on our other children who saw Mya’s illness requiring more of our attention. At one stage the boys wanting to be sick enough to go to hospital so Mum and Dad would give them more time. It made us realise that we needed to assure our boys that this was just due to Mya’s being ill and we made more time with Jackson and Mason to show how much they were loved.
After one year Mya went back to hospital for a routine check that saw her with Peritonitis. An infection in her PD line due to Mya trying to help by cleaning around her tenckhoff. She was hospitalised for another month where she had surgery to take out the old tenckhoff and replace it with a new one on the other side of her tummy. She now had one healing battle scar and a new line!
The same treatment continued for another twelve months when we were told she needed to have the line removed as the lining in her tummy had hardened and they weren’t getting off as much fluid as they were hoping for.
We had been in Auckland for 3 months before they gave us the news, living out of suitcases in the Ronald McDonald house waiting for them to tell us we could go home. We were called into a boardroom meeting with the team of specialists where they asked us how we thought Mya was doing. We explained we thought she was doing ok and were hopeful they were about to tell us we’d be leaving soon.
Instead they said, “She’s not doing too well and the scary thing is you’ve seen her unwell for so long that you’ve just become accustomed to the fact and couldn’t see the signs of her deteriorating.” That was a bit of a wake-up call, to be told we couldn’t see how sick our own daughter was.
They explained to us that she needed to change from Peritoneal Dialysis to Haemodialysis within the week and that would require more surgery. They also explained that the only place in New Zealand that performed Haemodialysis was the Auckland Starship Hospital under supervision of qualified paediatric haemodialysis technicians, which meant staying in Auckland indefinitely until she received a kidney donation or transplant.
With this knowledge Richie and I decided we needed to do something. We were desperate to go home and see our families and we both had jobs that required some explanation as to our situation.
Richie handed in his resignation from the New Zealand Corrections Department having been a Corrections Officer for the past 5 years. He had overwhelming support from his colleagues who kept in constant contact regarding the updates with Mya and by showing their support in so many ways. They sent food parcels, collected money and on occasion some visited us from Wanganui. It was amazing and very gratifying.
Needless to say we both decided to reside permanently at the Ronald McDonald House in Auckland as we were ineligible to work and get a permanent home. We had no income and sought help from social workers in the hospital. They helped us with a benefit that allowed us a combined income of about $300 per week. It wasn’t much but we made it work.
By this time Richie and I were a little on the heavy side with both of us tipping the scales over 100 kilos each. Richie wanted to take the chance to help his daughter and started training to lose weight to be able to give Mya one of his kidneys. We were told of the implications, the side affects and, that most important thing, that even though Mya may receive a transplant, it wasn’t a cure.
We had to understand that even if Mya’s body did take the transplant initially, there would always be risks and that it could fail at any time due to a number of different factors. But to not try would be unforgivable.
Richie went through a vigorous training regime and diet overhaul. He went through a number of tests including the psychological tests and couldn’t believe the lengths the doctors went to, to ensure you were doing the right thing – for yourself. A little after 3 months and down at least 15 kilos Richie was told by one of surgeons he had a long way to go before they could even consider him a candidate. A little disheartened, he struggled on. During this time, Richie’s brother called and asked how it was all going. Richie explained that all was going as well as could be expected but explained that Mya was still suffering from her disease.
Richie’s brother, Glen Tamatea, distraught at the thought of his niece, couldn’t sit back any longer and jumped at the chance to help. He immediately went through the correct channels to get tested and was a positive O+ blood type and a match with Mya. He went through rigorous testing and came to see us as often as he could. He would be flown to Auckland to undergo bloods, psychology tests and so on. We enjoyed the visits and Mya loved the cuddles.
While on one of his visits, Mya who had been attending the Newmarket Primary twice weekly, came home with a sad face. As we all got out of the car she turned to us and said “I can’t smile” . Puzzled we looked at her and asked her to try. Bewildered and unaware, Mya had suffered what the doctors thought to be a mini stroke which paralysed one side of her face. She was unable to smile, to blink on command and unable to show any emotion.
Mya stayed this way for months. We aren’t quite sure how it happened but Mya gained function back in that side of her face and the paralysis took hold of the other side of her face. Mya was beginning to no longer walk the distances she used to, she wobbled and fell to the floor weak in her legs, unable to hold her own body weight. She lost weight rapidly and was put on overnight feeds to increase weight gain.
She became more vulnerable while dialysing, suffering seizures and vomiting regularly. She was showing signs of rapidly deteriorating. Glen tried to push for further and faster follow-ups but was disappointed when after all he had done, to find out he was suffering from a condition of his own which meant he could no longer be Mya’s donor. This was a low blow to all of us, especially Uncle Glen.
Back at square one we approached our specialist team and asked what could be done. They explained that Mya’s own kidneys were seeping toxins into her body causing her to become so frail, suffer from paralysis and ongoing problems. It was decided that they were both to be removed.
On the 29th of April 2008 Mya’s surgery was scheduled. It just so happened to be a very big day in our family as Jackson was turning 10 on this day as well. We tried to soften the day by working hard on decorating our little room for Jackson as he woke that day. The room was filled with balloons, streamers and party hats and the table was dressed as if for an amazing party! Mya loved the morning with her brothers and as they set off to school she set off to surgery.
The surgery went as well as could be expected. They were unable to perform keyhole surgery for the removal of both kidneys as they experienced complications with one. They had performed one side keyhole and the other open surgery. She had the battle scars on her back to prove it.
Within a few weeks Mya had regained the function in her face as if nothing had ever happened. She smiled and we were all so happy just to have that image of her back again. She still had the wobbly style of walking and was issued a wheelchair permanently as they were unsure if she would ever walk normally again.
As time went on so did life at the Ronald McDonald House. We had become accustomed to living in each other’s pockets and missed home every day! Even though it was only 6 hours drive away, Mya wasn’t allowed to leave the hospital city. She had no kidneys in her body and was reliant on her treatment to live. She wished everyday just to be home, to have a new kidney and to go to Disneyland.
Sometime later we received a phone call from Justine Kereama, one of our best friends. She was just checking in to see how Mya was doing and was shocked to realise we were still in hospital. She didn’t even hesitate and said, “That’s it, I’m getting tested!” She didn’t wait for a response as none would come, I think I was crying as she said I love you before hanging up. Within a few short months it was Christmas and we were yet again about to celebrate it in the hospital.
With her older brother having been a kidney transplant donor already to Rugby Legend Jonah Lomu, Justine had the best advice and contacts from Grant. She was able to speak first hand with specialists and ensure the ball rolled straight ahead. She was so thrilled just to be able to help one of our babies. I’ve never felt more gratitude for a friend beyond this moment.
On December the 17th 2008 Justine gave us a call. As I answered all she said was, “Merry Christmas!!!” I knew immediately she was given the go-ahead and we were both ecstatic. She said that the surgery had been booked in after the Christmas break to allow for doctors’ holidays. Despite being away from our families, we had finally reached the light at the end of the tunnel and it felt amazing! Mya finally had a date and we were one step closer to going home!
On the 16th of February 2009 Justine and Alan (Justine’s long-time partner) met us in Auckland to prep for surgery. We got together with Mya and had big cuddles on the Children’s ward and Aunty Jay and Uncle Alan spent quality time with Mya. It was all so overwhelming and we were all a little nervous and apprehensive about the whole ordeal. But nothing was going to stop Justine from gifting Mya with life.
Transplant Day. As soon as it dawned on us, we knew today would be a big one. Richie and I kept our boys home from school that day and our friends and family travelled to be with us. We waited until12 midday when they finally wheeled her from us as they had just had word from Justine’s surgical team that her operation had been successful and the organ awaited Mya. We waved goodbye with happy and anxious tears.
As soon as Mya went into theatre, a sudden realisation of shock, anxiety and other mixed emotions started to take over. Richie and I kept ourselves busy with our family and friends and waited until Justine came out of recovery to see her. It was so good to be with her, knowing Mya was still in surgery. Justine felt the pain of it all and needed to rest the entire night, but was determined to be fighting fit within a week after her operation! (Super woman!)
By 5.30pm that night we got the call to come and see our baby. She lay there in the PICU under the foil-like blanket again, which really brought back memories, but you could definitely see the changes in her face immediately. She had so much more colour to her skin tone and she just seemed different. We were both very happy she went through the transplant extremely well.
Just two days in the PICU and Mya was back up on the ward! She was like a little superstar wanting to eat and drink everything! She was off the fluid restriction but gained a lot more medication. In just one week Mya had gained a significant amount of weight and was looking really healthy.
Thanks to Justine we were able to go home back to Wanganui after almost two years living in hospital! I cannot tell you the feeling of going home. Four and half months after the transplant, one furniture removal truck, one 4×4 truck and one station filled with our belongings, we were set to go home. It was a very emotional goodbye to the people who saved our daughter, housed us and became our adoptive family.
Mya had not been away from the hospital for some time and they wanted to give her something – a little holiday at the newly built Ronald McDonald House Retreat House in Rotorua for a week’s holiday. It was the perfect way to leave, to have some much needed time away just the five of us. We’d spent so much time in a communal living environment it was so blissful to just be a little family. What they gave to us all was just incredible.
The support we received constantly from our family and friends helped with every day and of course we got emotional support from Kidney Kids of New Zealand. Paul Norfolk developed a close relationship with Mya and wanted to help her with one of her wishes. He wanted to send her to Disneyland. With the help of Mazda New Zealand and Television 3 NZ we were sent to Hong Kong on an all expense paid trip of a lifetime. Mya was completely overwhelmed! We had a television crew capture the entire event and we promoted Kidney Kids at a radio event in Hong Kong not long after our arrival.
To try and give back for all that we received, during our two years at the Ronald McDonald House we raised money via an online system with the assistance of the Ronald McDonald House Auckland to raise money for more Transplant Family rooms for all children with life-threatening illnesses. We spoke publicly via radio and television, we made appearances when requested and never turned away the opportunity to give our time. Richie and Mya filmed a television advertisement to raise awareness of kidney disease in children, filmed a documentary about life in the Ronald McDonald House and Wanganui NZ have followed her little story.
Mya met Jonah Lomu at a Kidney Kid event in the same year she received her transplant.
We have received amazing support from the Ronald McDonald House Auckland, Social Networks – Social Workers via the Hospital, The Lions Foundation, Kidney Kids of New Zealand, Mazda New Zealand, The Corrections Department Wanganui, Wanganui Hospital Community Nurses New Zealand, Starship Hospital Paediatric Kidney Specialists and amazing family and friends.
Life back in Wanganui was far from the normal hospital routine, no 6.30am blood tests, no fasting, no fluid restrictions, no dialysis, no seizures, no pain. It was a wonderful thing. Mya was home schooled for the rest of 2009 and went everywhere with a mask to keep out bugs and continued with her medication. She breezed through everything and took everything in her stride.
On her one year anniversary (transplant date) we decided it was time to start living. To take what little time life offers you and take our children to Australia to show them that life is what you make it.
After discussing the move with Starship Hospital and under advisement they organised a Paediatric Kidney Specialist to take Mya’s case and gave us the details of appointments and so on. We were given permission to take our daughter and start living. She met the doctors and had her first stay one in hospital only one month after arriving due to fatigue and a mild infection. I guess the move impacted Mya more than we realised.
She was homesick for some time but has since adjusted very well. In May 2011 Mya presented in Brisbane’s Royal Children Hospital with rejection and so we started to reassess our situation and thought about moving back to New Zealand.
Richie and I were told that Mya’s kidney was now failing and there was very little chance that her kidney would last the next year at this rate. We were given an ultimatum to choose to let Mya’s kidney die off (in approximately 6 months) or give her a medication that could potentially kill her to try and save her organ for at least one more year. It would fight off all the bad antibodies but would also kill off all the good. We were advised she would have no immunity for some time and would require 24 hour supervision while the medication Thymoglobulin was being administered via IV in ICU.
We were given 24 hours to decide.
The next day we ok’d the medication to be administered and we watched as Mya’s body accepted the drug. Richie and I made the decision to continue the next lot of meds for Round Two’s dosage. Mya once again accepted the drug and her kidney carried on. She did at least 5 rounds of medication where she was monitored throughout the 7 hour period. Mya remained in hospital for two weeks.
Due to her immunity being so low, Mya was advised that she wouldn’t be able to travel and had to remain very vigilant with her health. She was now at risk of catching anything. We cancelled our wedding in New Zealand, scheduled for November 2011, due to Mya’s health and had a small intimate wedding with her by our side in August 2011 instead. It was brought forward as her grandparents were desperate to see her and the guest list was cut dramatically to ensure Mya wasn’t subjected to a lot of bugs.
It has been almost one year since that medicine was administered and Mya has continued to carry on regardless of diagnosis. She doesn’t appear unwell at all. She has the biggest smile and the most beautiful outlook on life. She appears amazingly healthy despite her Tacrolimus levels being very low and despite the odds of her kidney breaking down within a year.
She went home for the Christmas holidays in 2011 after being granted permission to leave Australia just one day before the booked flight. She does her very best to stay hydrated and, as much as it’s a struggle to take ongoing medication, I can’t imagine the struggle Richie, Jackson, Mason and I would have without her here.
We are so very proud of Mya and even though the road to this very place hasn’t been an easy one, we wouldn’t change a thing. We know the real reason for happiness and our children are our world.
I know one day we will be faced with dialysis, transplantation and organ donation again. We know the implications that we will face will be harder the second time around, but we are optimistic, a little more aware of our choices and we are open to all advice that benefits our daughter.
She is fighting every day to be a normal 11 year old girl and her dreams will keep us all going.
Thank you for sharing in Mya’s journey…Kathryn Tamatea
CKSN would like to sincerely thank Kathryn and Mya for sharing their kidney journey.