Sophie

The first Biliary Atresia baby to be born in Invercargill. Sophie is well travelled having spent her first six months of life, with multiple admissions to three different hospitals, being admitted six times for a total of 18 weeks.

Maria and Arkie came to New Zealand to study in 2018, they loved the country and decided to make it their home. Living in Queenstown, they had a wonderful life, both with good jobs, surrounded by close friends and enjoying a delightful lifestyle. Trying for a family proved to be challenging however, with Maria sadly experiencing three miscarriages before falling pregnant again in 2023. Sophie Violet Oliviera was born on the ninth of December 2023, this beautiful baby girl completed their dreams.

Sophie’s arrival was not quite as anticipated. Plans for a quiet, homebirth, changed abruptly when Sophie was found to be completely breech once mum was in labour. The midwife and Maria had to make an emergency helicopter trip to Invercargill maternity hospital, to ensure a safe delivery.

Arkie was left to drive three hours by car to join them. His journey was filled with anxiety, being concerned that he was separated from Maria and anxious about the birth complications. Adding to his stress, there was a severe storm, making driving dangerous and cutting off cell phone access, so he couldn’t keep in touch with Maria during the long drive. Finally, he made it to Invercargill and was able to join Maria.

When Sophie was born safely later that day, all the anxieties melted away as the couple welcomed their new baby girl. Sophie was a beautiful baby, everything seemed to be fine. Her eyes were slightly jaundiced, but the staff assured the family that this was normal with a split bilirubin test showing no issues. They were informed that the jaundice would fade in time. The family returned to Queenstown with baby Sophie, settling into new routines.

Six weeks later Maria was becoming a little concerned because the jaundice had not gone away as promised. She took Sophie to her GP, who ordered a repeat of the split bilirubin blood test. This test was found to be positive however, and the situation was quickly escalated. Maria and Arkie were asked to drive Sophie back to Invercargill hospital and further tests were completed.

 An ultrasound at Invercargill hospital failed to show the reason for the blood result, and after consultation it was decided to fly Sophie and her parents to Christchurch hospital. Under the care of Professor Andrew Day, a biopsy was completed, and Biliary Atresia was conformed. Sophie spent a week in Christchurch hospital and was 7 weeks old when finally diagnosed.

Again, the medical team moved quickly to get her the surgery she needed. Sophie and Maria were flown by Child flight to Starship hospital where she underwent a Kasai procedure. The family spent a further five weeks in Auckland Starship hospital as she recovered from surgery. Her jaundice cleared and she appeared to be doing well when she was eventually allowed to return to Queenstown.

Back home again, Maria did her best to nurse Sophie back to health. She was still underweight and was struggling to gain weight. She was placed on a Hickman line for IV nutrition, but although her tummy was quite extended, she was not gaining enough weight to meet her Plunket milestones. There is limited medical support in Queenstown, with a lack of community and hospital services. Sophie’s condition was therefore being closely monitored by the Starship team.

In March 2024 Sophie was flown back to Auckland Starship hospital. She was very unwell. Unfortunately, she also contracted Covid 19 at Starship. Her liver health took a turn for the worst with a very scary bleed-out requiring endoscopy procedures. Her parents were terrified by the severe bleeding. It was traumatising, hitting the emergency call button and then watching staff rush in to save their baby.

Sophie was very ill. She was transferred to Paediatric intensive care (PICU) for the next six weeks. Her liver was in failure however but had to recover from the Covid-19 and stabilise, before she could be assessed for the Liver transplant list. She very slowly recovered and even reached her weight target.

Meanwhile, Maria was assessed and approved to be a living Liver donor. She was thrilled to be able to help her precious baby in this way. A planned ‘living’ transplant has the advantage of being able to be scheduled and gives some control back to the family. Not every parent will be a match or be medically fit for this procedure, but where it is possible, it is an amazing way of helping your child. It is interesting to know that under 12 months of age, the mothers blood type doesn’t matter.

On the 29^th of July, the liver transplant was completed. Maria went into surgery first, followed by Sophie. This was an incredibly stressful time for everyone, especially for Arkie who was pulled between two loved ones on different wards of the hospital. Adding to his stress, Arkie’s father passed away from a heart attack on the same day of the transplant.

Less than 24 hours post-surgery, Maria was visiting Sophie in PICU to check on her daughter’s progress. Maria was discharged from ward 72 within 48 hours, this was very quick, although her own recovery time was to take many weeks, she was determined to be there for Sophie.

Immediately after transplant Sophie’s jaundice cleared completely. She made a great recovery in PICU and was transferred to ward 26b after only a few days. Six weeks later she is a different child, alert, active and catching up on her development milestones. She still has a nasogastric tube but is also starting to take some solids by mouth. Sophie loves being able to hold a cup to sip water.

The family spent a few more weeks at Ronald MacDonald house Auckland as Sophie recuperated. Meanwhile, they made the big decision to move from Queenstown to Christchurch to be closer to Professor Andrew Day and the clinical services at Christchurch hospital. On Friday 20^th September they made their journey to Christchurch Ronald MacDonald house and are on their final journey to their new home.

We wish you all the best for the future and look forward to catching up with you all at the Christchurch patient member events.

Aroha!