The only warning Arky Loveridge’s parents had prior to his birth was the potential imaging of what was considered a heart defect. Ironically, this is the only problem that he does not contend with on a day-to-day basis.
Arky was born at 32 weeks gestation and spent a lengthy stay in the NICU. His parents Nathan and Erin had minimal insight into what Arky’s life may be like with so many different complex medical issues. The first hurdle being diagnosed with Bilateral Choanal Atresia, resulting in him being intubated from birth until around 3 weeks of age when he was able to have this surgically rectified. Choanal Atresia is a congenital disorder where the back passage of the nasal cavity is completely blocked affecting either one nostril, or in Arky’s case, both nostrils were occluded. The team stented Arky’s nostrils open and made a new airway. This would become a frequent issue in his first year of life. With Choanal Atresia other differences were noted with Arky’s features, his ears were abnormally smaller. His family were worried about his hearing (this has been investigated and he now has a wonderful hearing device that gives him a chance to better develop and explore the sense of hearing). What was also questioned was his sight and whether it was affected, but in time the family were told how impaired it may be. They were given a preliminary diagnosis of CHARGE syndrome; this is a genetic syndrome that affects the above sensory ailments, along with other problems such as growth and development and unsurprisingly heart defects. Luckily, the medical professionals have not uncovered anything too concerning with his heart function.
When life began to settle a little and the family focused on nurturing a pre-mature infant, the news arrived at around 3 weeks of age that his Guthrie’s test (known as the heel prick test) had uncovered a new issue that was initially identified as SCID (severe combined immune deficiency). However, Arky’s family would find that he in fact has what is called Congenital Athymia (this is the absence of the Thymus Gland).
The Thymus Gland is responsible for maturing T cells and educating them in the role of developing a functioning immune system to fight off infections and identify foreign bodies. It is considered a life limiting disorder because without a Thymus we do not have the ability to fight infections like our peers. At this point the treatment pathway could be a bone marrow transplant; however, Arky needed a perfect match to do so. Upon testing the family, including Arky’s 4-year-old sister Ruby, none were of the perfect bone marrow donor requirements. At this point their only option was to apply to the powers that be to get them a Thymus transplant. However, this was not just any ordinary transplant, it is still in the process of being an exploratory measure in the world of medicine. After investigating availability between North Carolina, USA and Great Ormond Street Hospital in London, United Kingdom the decision was made that the best approach would be with London, and arrangements were made to make it happen. It took a lot of planning and a lot of medical reviews as Arky’s airway management were not exactly perfect in the early stages.
The issues around Arky’s airway were mostly around suctioning, and after what felt like forever, the communications between Waikato Hospital, Starship Immunology and Great Ormond St Hospital took place. It was confirmed the Loveridge’s were heading to the UK to get a Thymus transplant.
As soon as the wheels were in motion
COVID-19 brought it all to a screeching halt, the world went into a standstill,
lockdowns came into force and the Loveridge’s had to navigate carefully with
restrictions around New Zealand’s COVID response.
Great Ormond St reached out – and suddenly, the decision to proceed with their travel plans resumed, although with new restrictions in place. At this foreign hospital there were no visitors on the hospital grounds, there was to be always one caregiver with the patient, and there were strict rules on the fact that no siblings were permitted within the facility either. This came with a huge challenge and a decision that no family should have to make; Nathan and Ruby would remain in NZ whilst Erin accompanied Arky to the UK to partake in this journey.
A medical professional familiar with Arky’s care and needs accompanied Erin, alongside Arky, to support them on their flights to the UK on the 6th of June 2020. Rushing through Los Angeles International Airport with two hours layover and after-hours long journey via commercial airliner, they landed in the UK and were safely handed over to the staff in Great Ormond St Hospital.
After a month’s long wait Arky had his Thymus transplant on the 2nd of July 2020 the surgery went well, and everything went to plan. They waited 3 months until a Thymic Biopsy to check that the grafted tissue was beginning its role as T cell educator, however one-month post-transplant, Erin had a mum-gut feeling, she believed that Arky’s airway was not as stable as before. Slowly changes began from minor issues to ones that were overwhelming and raising eyebrows. Upon reviewing Arky’s airway the doctors found that he would need a procedure to assist his breathing as his trachea had narrowed making breathing difficult and hard work, this procedure is called a tracheotomy. This was opening the safe gateway to return home. After having help from the NZ Air Ambulance Service – they assisted in getting Arky and Erin safely back to NZ on December 5th, 2020 where they would then isolate as per NZ Government restrictions on travel. Erin stayed in a MIQ hotel whilst Arky stayed within PICU at Starship Children’s Hospital. They had an exemption so that Erin was able to visit Arky each day and spend adequate time with him, yet she also had to report back to the Hotel every night and undergo all the guest checks that the government had set in place as per COVID requirements.
Now back home in NZ, Arky’s T cell levels are monitored often, and the most rewarding part is to hear that the numbers are increasing, and things are slow and steady but most importantly a positive outcome. Immunology are now confident of these outcomes, that they can begin weaning him off some of the medications that have been a huge part of his journey.
Arky’s cheeky demeanor shows he is a total toddler, although he has been impacted by such long-term hospital care and his general development is delayed. In his life he has challenges, and it takes brain power to do what he sets out to do, his mobility is great, but this is all a part of the Loveridge’s journey. To them milestones are not as important as other things. They now are focused on getting him well enough and engaged to further that development, he is great at his decision-making skills and as any other child he loves bath time and playing with musical toys. His parents hope for his future is that he gets opportunities to live like everyone else, although he will likely need more help than most, he can still find his own way in this world. At 18 months old now he is coming into his own and loves exploring what is around him.
Arky has lived through a great deal and although a lot of it has been poking and prodding or investigations he is incredibly forgiving and has coped remarkably well. His parents hope that he remains resilient and lives this way no matter what life throws at him. We here at IDFNZ KIDS Foundation hope the same, and wish Arky all the best in his next step in life.