23/09/2025
King's Kid Isabella 🥰
Thanks to Scott, and his family, who supported his organ donation decisions, and whose story we shared yesterday, Isabella is living life with her gifted liver despite a few issues currently occuring.
Isabella’s mummy Rachel shares their story:
“Isabella was born 5 weeks early on 5th July 2015 by emergency C-section and weighed 4lb 9oz.
Soon after she was born, she was diagnosed with Duodenal Atresia which meant her bowels and stomach were not connected and therefore needed a life-saving operation to connect them both together. She was whisked off to Addenbrookes Hospital in Cambridge for the operation.
As the surgeons operated on her they found by chance that her stomach, liver and heart were not in the correct places. Her liver was on the left, her stomach was on the right, and her heart was directly in the middle of her chest, and she also had 2 spleens! This we found out is called Situs inversus abdominalis and polysplenia. The surgeons all did a fantastically wonderful job in repairing her as best as they could.
18 days later Isabella was transferred from Addenbrookes Hospital to our local hospital, Colchester General Hospital, where we were told that she was making a brilliant recovery. In fact, a few days later we were allowed to take our daughter home. Little did we know that this was just the beginning of a completely devastating diagnosis.
When Isabella was 20 days old our community nurse told us that her stools looked almost white in colour, and that we needed to return to our local hospital for bloods tests. We returned, and after various blood tests and a biopsy on her liver we were told that Isabella had Biliary Atresia, which is a rare type of children’s liver disease, and that her bilirubin (jaundice) levels were very high and that she needed another lifesaving operation imminently to restore the bile flow to her liver, a Kasai portoenterostomy. This procedure would restore the bile flow to the liver.
A week later, on the 7 August 2015, we were sent to Kings College Hospital in London for Isabella’s Kasai. She was only 4 weeks old, so tiny and about to have her second lifesaving operation. We were told by the surgeons that the procedure would either temporarily fix her until she was an adult, or it may not work, and she would require a liver transplant! Immediately after her Kasai Isabella showed signs of improvement, and her jaundice levels were almost non-existent. So onwards and upwards from here we thought.
Two weeks later Isabella was discharged, and we could all be a family at home, along with Isabella’s siblings, William and Abigail-Grace. Isabella, who underwent regular blood tests and ultrasounds on her liver at King’s, was doing so well. We were over the moon.
However, in December 2017 Isabella had a chest infection which no-one knew she had, until a routine appointment with her gastro consultant at our local hospital, Dr Cackett. She sent Isabella for a chest x-ray where it emerged, she had pneumonia in both lungs. Isabella was immediately admitted for a 10-day course of IV antibiotics. Further blood tests revealed that her jaundice levels were gradually going up too. Her liver wasn’t coping with the pneumonia, and we were then told that Isabella may now have to be listed for a liver transplant as she would only get increasingly sicker.
Isabella deteriorated as each day passed, and she became very ill with her jaundice levels rising and her bloods showing that her liver was struggling.
On the 17 June 2018 Isabella was listed for a liver transplant. We were devasted. She was only 3 years old, but she was in pain, she was tired all the time, and her general health was failing. Something had to be done before I lost my baby forever.
Every day was a battle for poor Isabella. We were told by Justine, our transplant co-ordinator that we were basically putting our lives on hold whilst we waited for the call for transplant. Phones were not to be on silent or switched off and we were to answer the phone immediately if a private caller called.
The next few months passed with nothing, no transplant call. A further few months passed and still no call. A year passed and no call. I was concluding that I was waiting for a phone call that was never going to happen.
In July 2019 we received a call to say there was a potential liver for Isabella. An ambulance took Isabella and I up to Kings. However, after a day of waiting around we were told the liver wasn’t suitable for our little girl. We were devasted but returned home and continued our wait.
A couple of weeks later another call. We returned to King’s and after yet another day of waiting around we were told that evening that the liver wasn’t suitable. We were so devasted but had no choice but to go return home and wait….
We heard nothing for a few months but one evening in Autumn last year we received our third call. I thought this has got to be it, third time lucky! We went to King’s and waited to see if the liver was a match for our beautiful girl.
Finally, we were told it was going ahead at 11am the next morning, and she would possibly be in theatre for 10 hours. The longest ten hours of our lives.
In September 2020 we as a whole family were extremely excited to be able to visit RAF Marham where Scott (Izzy’s Superhero) was based as a Senior Aircraft Technician, and the best part of the day was that finally after 12 months to be able to finally meet Scott’s wonderfully brave and amazing parents, Steve and Donna. Izzy was absolutely besotted with Donna, and she still is.
What incredible people, who made the choice to let Izzy be able to grow, talk, laugh and be able to play with her siblings happily and pain free. Two selfless parents who made a heartbreaking decision to allow their beloved son to gift our little girl life. My heart breaks for them every single day.
Since transplant there have been many highs but on 1st March this year Izzy was admitted to King's for PTC and Stent Insertion as she had a Biliary Stricture (blocked bile duct). They inserted a Biodegradable stent, and we were told that it should take 10 weeks to fully biodegrade, but we would have an ultrasound to confirm.
On 2nd June we had the ultrasound which was showing that the stricture was in fact still there. The Liver Team decided that it hadn't worked and that the stricture was quite severe. We were then told that Izzy will need another MHCP (MRI)
On 14th August we went back to King's for Izzy’s MRI and bloods. The bloods came back quite bad, and I was told to wait until Izzy had been discussed in Radiology and with the Liver Team who would then get back to me with a plan.
We heard nothing for 3 weeks, but at the beginning of this month, a radiologist called, to inform me Izzy was now jaundiced and her Bilirubin level was rising. Izzy is yellow, and in a bit of pain. We were also told that they are going to go back and re-do the PTC and Stent Insertion and to hold on and wait for the3rd October, the procedure date.
Izzy’s blood results a few weeks ago showed that the liver is not well and she’s now been diagnosed with Hypoalbuminemia - the liver isn’t producing enough Albumin) bilirubin is over 30 and her LFT’s are up in the 800-900’s. She’s also got a stricture in her colon.
Her bloods from last week have come back worse than the previous ones, and King’s have said that they expect that because of the blockage and her requiring a third PTC (Percutaneous Transhepatic Cholangiogram).
However, throughout all this Izzy’s donor and his family continue to be, and will always be, thought of each and every day 💚💙”
Please about your decisions with your loved ones, say and register your decision at NHS Organ Donation
