06/07/2025
King's Kid - & member of King's Children's Transplant Team - Isabella đ„°
Thanks to her donor Isabella is now able to be the best big sister, but itâs been quite a journey from her diagnosis of liver failure to today. Her mummy Gemma explains all
âIsabella was born on 30th April 2019. We had a a standard birth and all was well.
On her second day of life she was jaundiced and the nurses said she was below the treatment line, but that it should disappear over the next couple of weeks.
Isabella started loosing weight very quickly and we had the community team coming out every third day for monitoring because of the weight loss.
Unfortunately no medical profession acted on this, and the excessive feeding, and they put it down to cluster feeding. It turns out Isabella dropped from the 75th centile to the very bottom and this should have been an urgent admission to hospital but this didnât happen.
Isabella finally got seen by the pro longed jaundice team when she was 7 weeks old in the June. We got to the hospital (it was a Wednesday) around midday, and they did some bloods and a wee sample. We were waiting for hours, just being told that they were awaiting more results from the blood tests.
It was 10pm at night when they decided that they were going to be admitting Isabella overnight for observations and an ultrasound the following day. The consultant was very concerned as she was showing signs of âBiliary Atresiaâ.
The following day we were told an urgent referral was being sent to a liver specialist team at Kingâs College Hospital in London and we would hear from them shortly. We heard from them the following day and told that they wanted Isabella in on the Sunday for more tests and investigations.
On the Monday, Isabella had bloods and an ultrasound, the Tuesday she had her liver biopsy, and Wednesday we got sent home to await results.
On the Thursday, around 10am, we got a phone call saying we needed to be back at Kingâs College Hospital in London for 4pm that day as Isabella would be going down for surgery the following morning, for a surgery called the Kasai Procedure.
Isabella was in hospital for a week and we were allowed home. We were told of symptoms and signs to look out for.
All was well for a couple of months until we ended up in our local for her extended tummy, she had acities. A couple weeks later she spiked a high temperature and was refusing her milk and unsettled. We took her to hospital to get reviewed where it turned out she had sepsis, liver infection, liver failure and ascities.
After this it all went downhill quickly. Isabella was constantly in our local hospital due to a high fever and suspected cholongitus. Isabella was under weight for her age even though she was on special formula for her liver and adding extra fats to her food to encourage weight gain, but it wasnât working.
Every time she got home it would be for 1 or 2 weeks and she would be back in hospital again with the same symptoms.
Isabella went through multiple scans and tests at Kings the next few months and they had decided in the December after a CT scan that she was to undergo a transplant assessment.
In the January Isabella had an osephagal bleed and required an urgent transfer to Kings to undergo some surgery. They decided to bring her transplant assessment forward a few weeks and do it whilst we were there. They put her forward and the outcome was that Isabella need to be listed for tranplsant.
Isabella received her transplant in the spring of 2020. She went down at 10.20pm, and was in surgery for 8.5 hours. We were allowed to go and see her in PICU where she spent the next few days before moving back onto the liver ward for her recovery.
Unfortunately Isabellaâs recovery was difficult and she had a few complications over the next few months with lots of scans and blood tests, surgeries and change of medications. Isabella was also rushed back to surgery for a bile leak which they couldnât control and ended up back in PICU, she had sepsis again.
We got home 27 days after the transplant. Isabella was at home for 32 hours until we had to rush her to our local because she was very unwell. They admitted her and had to stabilise her before they could transfer her to back to Kings where she spent another 27 days and another operation on her 1st birthday. She then faced rejection where she had to go on IV steroids.
However we got to finally celebrate her 1st birthday at home. Isabella got diagnosed with multiple allergies and unknown allergies and had multiple anaphylaxis.
Due to the surgeries Isabella had she developed a chronic cough and had to undergo a bronchoscopy where it showed she aspirated food/liquid back into her lungs and was now being seen by respiratory team as well for management of this.
Isabella became symptomatic for PTLD in late 2020-2021. However all tests came back negative.
Isabella had her tonsils removed in Spring 2022 as they routinely test post transplant patients for this, but unfortunately this came back positive. Isabella had early stages of PTLD.
Due to Isabella previously having a bad anaphylactic to the medication they treat this with when she was symptomatic (rituximab) so they couldnât treat her with it again as the risks were too high. They took Isabella off her anti rejection in July 2022 and she remains off the immunosuppressant medication, and cleared of PTLD at the end of June this year.
Isabella suffered a seizure in February 2022 due to very low blood sugar levels. Isabella underwent multiple tests and it turns out she has Adrenal Insufficiency and Hypoglycemia, because of long term steroid use, but they canât stop the steroids.
Isabellaâs hospital admissions have lowered significantly since Spring 2022 and Isabella is living a generally normal life. She has started swimming lessons, dance lessons and last June we even took her on her first holiday abroad!
Isabella has taken part in Transplant Active - Home of the British Transplant Games as part of King's Children's Transplant Team, for the last two years and is looking forward to her 3rd year this year.
In September 2023 Isabella also started primary school. She has also learnt to ride her bike with pedals and no support. She is over the moon.
Isabella has regular bloods and appointments.
In September 2022 we welcomed Isabellaâs little sister Charlotte into the world. Isabella is the best big sister and takes everything in her stride! She lives her life to the fullest and is a very cheeky and sassy girl and we couldnât be any prouder of her.
Isabella has managed to make some trips abroad and has thoroughly enjoyed herself on them.
Unfortunately in August last year Isabellaâs blood sugars dropped and she went unconscious whilst at home and rushed to hospital, where it was brought to our attention Isabellaâs liver bloods werenât behaving. They monitored it for a few weeks and as they remained on an upward trend Isabellaâs hospital decided it was best for her to have a liver biopsy, where this showed rejection, and Isabella was started back on her immunosuppressant medication after just over 2 years off of it. Thankfully, after treatment it has settled and she remains stable again.â
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