03/07/2026
Four year-old Teddy is waiting for his third liver transplant in his short life.
As he waits for his transplant his mum Emma who shared part of her liver with her beautiful son shares their story:
“Teddy was born on the 8th February 2022 at a very little 5lb 3oz at our local hospital. We knew very quickly that something wasn’t quite right, and after many tests and scans over the first few days the team felt he needed to be transferred as they couldn’t understand how his jaundice level was trending downwards, but unfortunately his bilirubin was constantly raising.
He had his first transfer to Addenbrooke’s Hospital, thankfully still local, where he received his first of many blood transfusions, & where the next day they found at 6 days old that he had scarring of his liver. Very quickly it was decided that he needed to be transferred to King’s College in London which came as a huge shock.
We made the journey to King’s and that evening we had to give our tiny 6 day old baby boy a kiss goodnight, and leave him to travel over 80 miles to get home to our eldest. We got all of our bits together to go and be as close as we could to Teddy whilst trying to ensure that life was as normal as we could make it for our eldest boy who was about to turn 4 in a couple of days.
Luckily my Mum was able to come along with us so we could stay together as a family, and we are so grateful. Our stay in London ended up being over 5 months in total.
Once Teddy got to King’s, they again gave him more transfusions, blood test’s, scans and he also had a biopsy of his Liver at 9 days old to determine what was wrong with him. We received the results quickly and sat down with a Consultant and Dr who told us that Teddy had Neonatal Hemochromatosis I’ll be honest it’s still all a little blurry but we were told his INR which should be 1 was 2.8 and if it rose to 4 he would need a Liver Transplant, but they did explain that the Liver can regenerate so they would give him an exchange blood transfusion to give his liver a chance to repair itself.
Unfortunately for Teddy this wasn’t the case and at exactly 3 weeks old Teddy was listed on the Super Urgent transplant list. As it was too close to Teddy being born I was unable to donate any of my liver, and Teddy’s Dad wasn’t a suitable size match either. There were a couple of offers but unfortunately none were viable. We waited 7 weeks and in Spring 2022 Teddy received the best gift he will ever receive, the Gift of Life from his superhero donor. We will always be forever grateful and thankful to them for making this courageous decision to donate their child’s organs 🩷
As Teddy was so tiny when he received his transplant the surgeons decided a mono segment would the best way for him, and after a long 11 hour wait we got the call to go and see our boy in PICU. The difference in his colour was absolutely amazing and something I’ll never forget.
As Teddy was so small the safest option meant he was left open after surgery. His recovery went fairly well, and the team explained that they would need to close Teddy’s abdomen with a Fascia (which is a layer of tissue between muscle and skin from another donor) but this needed to be blood type matched so we waited a few weeks for Teddy to receive his next gift from a donor and their brave family.
We were discharged from King’s and made it back home with our two boys for the first time at the start July 2022.
Teddy’s first year was far from straight forward. He managed to somehow get most childhood illnesses due to his big brother starting school, but he really did so well throughout all of them.
However the following summer during a routine hospital appointment and having had contracted Covid somehow, further blood tests, ultrasounds and CT’s were carried out and we found out that Teddy’s liver wasn’t working as it should, and he had ascites building up again.
He then underwent more tests at King’s including an MRI, where they thought Teddy had blocked his Portal Vein, so we had a stay in King’s to get his levels right with the aim of going home & taking a blood thinner to hopefully stop any more damage.
However King’s decided to re-list Teddy for another Liver Transplant and in September 2023, I decided this time as I was able to that I’d like to donate part of my Liver to Teddy.
We went through all the tests and it was decided it could go ahead and was booked in for the start of November 2023. We did receive a call in the meantime but it was decided it wasn’t suitable for Teddy.
So we went ahead with me donating to Teddy a few weeks later. The morning of the surgery was very emotional for us all and knowing I couldn’t walk my boy into theatre was so hard, whilst also knowing that in a couple of hours he’d be in the theatre next to me ready to receive part of my liver.
After an extremely hard 15 hour wait my husband Greg, and Mum, were able to see Teddy in PICU, I remember every time I’d wake in ICU I would ask how he was doing. Little did I know that Teddy decided to bleed for over 4 hours at the end of the surgery meaning he used the most blood in the UK on that ,day and his surgeon slept in his office just incase Teddy needed to go back down to theatre again.
Thankfully, he did not and I was able to be reunited with my baby boy after 4 long days. He was still ventilated but recovering well. It was so good to just see him even if I couldn’t give him the big squidge and kiss that I wanted too.
I was discharged and then managed to keep going and seeing him each day for little stints whilst allowing myself to recover, and spend some time with my husband and big boy. My mum stayed with Teddy when he was stepped down to HDU, and I would go in each day with my husband. Teddy continued to recover so well that we were able to be discharged and go home after just 3 weeks, which as you can imagine after our first 5 month long stay we were all very surprised, but super pleased at the same time.
It was amazing to see the difference in our boy within 3 weeks. He was bum shuffling around and a few months later he was taking his first steps. Now we can’t stop him as he spends most of the time playing football with his big brother 💙
Sadly in the summer of last year we found again during a routine appointment and scan that despite his bloods being fairly normal Teddy had managed to block/close, rejected two of his veins, this time his Portal Veins and Inferior Vena Cava. They are still unsure how this has happened, and unlike last time when they thought he had clotted his vein it turned out that his liver had grown blocking his portal vein. They tried to reopen the veins in August but this wasn’t possible, so the decision was made to re-list Teddy for his third Liver transplant. He was made active on the list in December 2024
Unfortunately he hasn’t received any offers as yet but we keep hoping his call will come very soon.
Sadly the last couple of months Teddy has been paused on the list as they found he has several kidney stones in both Kidney’s caused by either infection and/or his medicines that he has to take daily.
We have been in and out of Great Ormand Street trying to remove them and all so far he has had 4 procedures and hopefully one more in a few weeks to remove the stents which have enabled the surgeons to access the stones internally.
Fingers crossed we can then get him active again and waiting for that call very soon.
However as the months go by sadly we do get more concerned for our little man and whether he will get his call in time. All we do as a family is continue to try and raise as much awareness that we can for organ donation.
In the meantime we just make sure we enjoy every moment we have with our brave boy, which now seems to involve a lot of football! He somehow loves it even more than his big brother
Please share your wishes with your family and friends as it honestly means the absolute world to families just like us 💙”
Please about your decisions with your loved ones, say and register your decision at NHS Organ Donation
