"As a family we continue to try and raise as much awareness that we can for organ donation and we would appeal to everyone to share their wishes with their loved ones as it honestly means the absolute world to families just like us. "

Four-year-old Teddy is waiting for his third liver transplant in his short life. His mum Emma, who has already shared part of her liver with her beautiful son, shares their story. 

Teddy was born on 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 rising.

He had his first transfer to Addenbrooke’s Hospital, thankfully still local, where he received his first of many blood transfusions and where the next day they found – at just six days old that he had scarring of his liver. Very quickly it was decided that he needed to be transferred to King’s College Hospital in London which came as a huge shock to us.  

We made the journey to King’s and that evening we had to give our tiny baby boy a kiss goodnight and leave him to travel over 80 miles to get home to our eldest. We packed our things to enable us 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 his brother who was about to turn four 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 five months in total.  

Once Teddy got to Kings, they gave him more transfusions, blood tests, scans and he also had a biopsy of his liver at nine days old to determine what was wrong with him. We received the results quickly and sat down with a consultant and a doctor who told us that Teddy had neonatal haemochromatosis. I’ll be honest it’s still all a bit of a blur, 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. They also explained 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 three weeks old Teddy was listed on the super urgent transplant list. As it was so soon after I had given birth, 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 seven 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 this family 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 and 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 about a donor liver 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. Knowing that I couldn’t walk my boy into theatre was so hard, whilst also being acutely aware 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 four 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 in case 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 four 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 to.  

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 three weeks, which as you can imagine after our first five 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 three 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 2024, we found again during a routine appointment and scan that despite his bloods being fairly normal, Teddy had managed to block/close, two of his veins, this time his portal vein and inferior vena cava. They are still unsure how this has happened. 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  

 In the last couple of months Teddy has been paused on the list as they found he has several kidney stones in both kidneys which may have been caused by either infection or the medicines that he has to take daily.  

 We have been in and out of Great Ormond Street trying to remove them. So far, he has had four 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. 

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.  Although he’s old enough to start school now, we can’t risk him picking up an infection and not being well enough for transplant should we get the call so I’m just doing bits with him at home.  

As the months go by, however, we do get more concerned for our little man and whether he will get his call in time. As a family we continue to try and raise as much awareness that we can for organ donation and we would appeal to everyone to share their wishes with their loved ones as it honestly means the absolute world to families just like us. 

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