Miana

Miana's Mystery 

Miana was born on the night of the 22nd of September in 2021.

She was a perfectly healthy baby girl who loved to feed, babble and play. Fast forward to the 23^rd of April 2024. She is unwell with symptoms of the flu; lethargy, loss of appetite, and dehydration.

We tried our best to keep her hydrated and comfortable, but it wasn’t enough to make her feel better. Miana started to show signs of confusion. She was looking past us as we were calling her name, and she had this very lost, gaze in her eyes. This frightened us so much that we rushed her to the emergency department (ED) in Wellington Hospital.

Hours before these confused episodes started, she was discharged from another hospital after completing a fluid challenge. The doctor informed us to “keep pushing fluids and observe”. The sheer panic of how fast she was deteriorating as the day went by was mind boggling. As the doctors were completing blood tests and connecting her to IV fluids, she became unconscious and had to be taken to the intensive care unit (ICU) to be closely monitored. Before she was wheeled down, the doctor notified us that Miana will need to be transferred to Starship Hospital urgently as her liver numbers were abnormally high.

A few hours go by, and the Starship flight team pick us up. At this point, everything is a blur, and we were still trying to pinpoint where it all went wrong. After a tense and nervous flight, we arrive in the paediatric intensive care unit (PICU) where she was quickly seen by the specialists.

Numerous tests confirmed she had a viral infection that caused her liver levels to be out of character. The episodes she was experiencing turned out to be encephalitis. There was no sign of why the liver acted the way it did, and a completed genetic test came back negative.

This stumped our family as we had no answers as to how and why this was happening to our joyful little girl. She was given all the medications she needed and after being in a sleeping state for 5 days, she wakes up and looks at us with the most innocent puppy eyes. Miana recovered after spending a week in PICU and 2 weeks in the neurology services ward. We returned back to Wellington, and she carried on living her best life. She would be found singing and dancing to music, as well as being a lover of the outdoors and animals.

Little did we know this was just the beginning of our story.

Fast forward to the end of July and we are back in the ED in Hutt Hospital. This time Miana is alert and awake, just lethargic, and not eating and drinking as normal. The nurses take blood samples, and within a few hours they inform us that her liver levels are a lot worse than last time, and that we need to go back up to Starship for further testing and monitoring. We head back up to Auckland with the Wellington Flight Team, and this time both of us could fit inside the plane with her. This eased our anxious hearts as we were in shock as to why this was happening again.

Not being able to take away the illness or pain she was experiencing was just gut wrenching. We arrive in the medical specialities ward, and we meet with the liver specialists who are speechless as to why this has now happened twice. More blood tests come back showing another viral infection has caused her liver to misbehave again. A viral infection that should just be a runny nose and wee cough. A viral infection that in any healthy child should resolve on its own.

Throughout this ordeal, Miana never lost her smile and she enjoyed receiving stickers for every finger prick she endured for blood tests. A few days go by and she is discharged from the ward with unfortunately, no clear answers as to why this happened within 8 weeks of the first admission. We return home and find ourselves making a plan to keep her safe in her own little bubble. This was really hard as she is such a social butterfly who loves to be around people and thrives off interaction.

As a result of the first admission, Miana was discharged with hypertension. She was prescribed a medication to help lower her blood pressure. A community nurse was assigned to us to complete regular visits to check Miana’s blood pressure and to do finger pricks for blood testing to keep an eye on her liver levels. This became a “new norm” for us as Miana started getting used to all the nurse visits and hospital trips. This wasn’t the start we had hoped for our child to go through at such a young age, but she’s shown immense strength through all the challenges, and she has since remained a happy and cheerful child which has made this journey a little easier to deal with.

Fast forward to the early hours of December 12^th. We are yet again, rushing Miana back to ED. She vomited a few times which had speckles of blood, we knew then that something was seriously wrong. The nurses and doctors did their routine blood tests and again, her liver numbers were high but not quite in the danger zone. We were admitted and she was kept on close watch. She was showing signs of recovery as she ate all of her dinner which consisted of her all-time favourite, chicken with mash potato and gravy. Throughout the evening, her liver levels were slowly creeping up, and she became very sleepy very quickly. Further tests were done by the doctors and not long after that we had some of the ICU doctors in the room with us as everything started going downhill quickly. The doctors called Starship as she was starting to show signs of encephalitis and her condition was worsening each hour.

Few more hours go by and we are back in the PICU air ambulance. The liver specialists met us in PICU and assessed her from head to toe. Our little girl was fighting so hard to keep her eyes open for us. We will never forget the daunting words of “your daughter is really really sick”. We really couldn’t fathom how Miana was her chatty and playful self the day before, to being unconscious and limp right in front of us.

While the PICU nurses hooked her up to all her medications and monitors, we prayed for her to be ok and that she would get through this ordeal again. The next morning the doctor takes us into a private room and breaks the tragic news that our girl would need a liver transplant to survive. She was in a critical state and needed a donor within 48 hours. Her condition was very serious, and her little body was fighting so hard to keep going. She needed a new liver while her other organs were still well and pumping.

Our emotions were all over the place and adrenaline started to kick in. We knew we needed to act urgently to save our child. We got on the phones and pledged a help line to see if any of our family and friends were a blood match and if they met the living donor criteria as we unfortunately did not fit the requirements.

After frantically calling as many people we knew, we started praying for a miracle. Later that dreadful evening we got a phone call that will change our lives forever. They found a donor for Miana.

The tears were streaming and everything was happening so fast. She was then set for surgery the following afternoon. Our family made it in time to see her off before she went down to theatre. It was a very long and difficult 8 hour wait but we held each other close to remain strong for Miana. We were anxiously awaiting the call but hoping it wouldn’t be earlier than the expected time it would take.

We will never forget the moment when the phone rang after 3:00am. It was the doctor informing us that the surgery went well, and she is now in her recovery room. We rushed up to PICU and saw our beautiful little girl lying so peacefully with her transplant wound covered up.

 We are still coming to terms of what she went through as you are never ready for your life to change in an instant. Miana spent a month in PICU after facing many complications following the transplant; her kidneys took a hit, and she needed to be on dialysis for a while. She then had an internal gastrointestinal bleed which was another scary time as it happened out of the blue. She had to have an embolisation to stop the bleeding. Following this, she caught another viral infection and needed steroids for her lungs as she was struggling to breathe. As any parent, you are on the edge of your seat wondering when your child will ever catch a break.

Thankfully after her lungs recovered, she was well on her way to making a full recovery from everything she endured in PICU. Miana progressed so well that she moved up to the specialities ward where she then went on to spend another 4 weeks improving and regaining her strength and mobility. She was later discharged from the ward, where we then moved into a transplant unit at the Ronald McDonald Domain House to begin her recovery phase. Miana attended physiotherapy sessions and weekly clinics with the liver doctor, nurses and dietitian. Her progress was slow and steady, but we wouldn’t have had it any other way. Fast forward 4 weeks and we are now on our way home. To say our story has now ended, it really has just begun.

A new beginning and chance for our family to keep living life to the fullest, and to be grateful for everything we have.

The greatest gift we will ever have is our daughter and we will forever be thankful to her donor and their family for this blessing.

We would not be here in this part of our journey without the wonderful doctors, nurses, and specialists who all played their part in caring for Miana.

Thank you to the Ronald McDonald House for providing a safe place for us to find our feet again.

Thank you to the IDFNZ Kids Foundation for your support and endless love. We appreciate you so much and acknowledge the hard work you do to keep families like ours together through tough times. We hope our story can help raise awareness about rare cases and how suddenly it can occur.

Wishing all the best to other families going through a similar journey. Keep going!

Remember, you are not alone.

All our love,

Miana Musuva & Family