Celebrating my little girl through an incredible challenge
When Jordan’s heavily pregnant wife Kath went to hospital with a sense there was something wrong with their baby, Aurora, the couple had no idea their world was about to turn upside down. Aurora was diagnosed with a rare condition which meant she would go on to spend the majority of her short life in hospital.
Jordan shares Aurora’s story with us and explains why he’s taking on an incredible challenge to honour her memory.
Aurora’s story
“Kath fell pregnant with our daughter Aurora in 2020, at a time when the world was turned upside down by Covid. Despite everything that was going on around us, the pregnancy itself went really well. Kath and I are both healthy and active, and for most of the pregnancy, there were no concerns at all.
One evening, at 32 weeks, Kath went to the hospital because she had a strong feeling that something wasn’t quite right. She was monitored, Aurora’s heartbeat was checked, and then we were reassured that everything looked fine. We were then asked to return the following day for what was expected to be a routine scan.
During that scan, the sonographer noticed fluid on Aurora’s tummy. She couldn’t say exactly what it was, but she knew it shouldn’t be there. From there, we were referred for further foetal wellbeing scans. Again, no one could give us a clear diagnosis, but it was obvious that something wasn’t as it should be. There was a talk of a possible bowel perforation or a problem with how her bowel had formed in the womb.
These early investigations took place at the University Hospital Coventry and Warwickshire. From there, we were referred to the Leicester Royal Infirmary to be seen by their paediatric team. At our first appointment in Leicester, a senior sonographer explained how he was concerned there may be something more serious going on. He could see a mass in Aurora’s abdomen with a large amount of blood flowing through it.
From that point on, we were monitored very closely, and it was decided that Kath would be induced at 38 weeks to ensure that Aurora would be born in a controlled environment, with all the right specialists around her.
She was born on the 24th November 2020 and almost immediately she was taken away for further tests and scans. We stayed at Leicester for around a week whilst doctors tried to understand what was happening to our little girl. It became clear that there was a mass blocking her duodenum, meaning that she couldn’t feed and would need all her nutrition through her veins.
This was an incredibly difficult time for us. Because of COVID restrictions, we weren’t allowed to stay in hospital with Aurora overnight, so each evening we had to leave her in the NICU to go home. Eventually, the team at Leicester felt they had exhausted all their options, so in December we transferred to the Queen’s Medical Centre.
When we arrived, Aurora was taken to the Neonatal Intensive Care Unit (NICU) where she was cared for under the oncology team. She underwent several operations and procedures, including one to fit a central line so she could receive nutrition and medicine more easily. She sadly also began to build large amounts of fluid in her abdomen, and an emergency decision was made to insert a drain to relieve the pressure.
Those were some very dark days, but the staff at Nottingham’s NICU were incredible. A biopsy was later carried out, and we were told that the mass wasn’t cancer. While that initially sounded like good news, it quickly became apparent that it wasn’t. Aurora was diagnosed with an extremely rare vascular tumour called an intra-abdominal pericytoma. The tumour had wrapped itself around so much of her central venous and arterial system, which meant surgery was impossible.
Out of desperation, a course of chemotherapy was tried. Unfortunately, this made things worse. The tumour was already pressing heavily on Aurora’s liver, and the chemotherapy placed further strain on an organ that was already struggling. Her condition deteriorated quickly after that.
On Christmas Day 2020, Aurora was transferred again, this time to Birmingham Children’s Hospital. There her case was reviewed by some of the leading paediatric surgeons and consultants in the country. After careful consideration, we were told that there were no viable options to remove or outgrow the tumour.
We shared Aurora’s story publicly, hoping that somewhere in the world a specialist might have an idea that hadn’t been considered. We were exploring and trialling suggestions given to us by Birmingham Children’s Hospital, largely to give us peace of mind that everything that could be done, had been.
Sadly, Aurora’s condition continued to worsen and towards the end of January 2021, we made the heartbreaking decision to bring her home on palliative care, so she could be comfortable and surrounded by family. On the morning of 31st January, Aurora took her final breaths peacefully in my arms in our front room.
Since losing Aurora, we have done everything we can to survive, to carry her with us, and to make sure her short life continues to have meaning.
I’ve decided to take on a challenge called Aurora’s Journey which is a 108-mile run which will retrace the route our daughter took throughout her care. The route will start at Leicester Royal Infirmary, travel through Queen’s Medical Centre and Birmingham Children’s Hospital, and finish in Coventry, where Aurora now rests. The run will take place over approximately 24 hours, beginning on 30th January and finishing on 31st January, the day Aurora passed away.
I wanted to thank all the hospitals that supported her and our family throughout her care and raise awareness of her condition.”
We’re so grateful to Jordan for sharing Aurora’s story with us, and for taking on Aurora’s Journey to honour her memory and help other babies and families in a similar situation.
If you’d like to donate to Jordan’s fundraising, please click here.
You can also donate directly to the NICU by clicking the button below.