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I just wanted to hold him again

Gina describes the impact on her family of her little boy going through transplant  during the pandemic.

Freddy, the youngest of my five children, was born in December 2016.  He was fine when he was first born but when he was about three weeks old he started looking a bit yellow. We took him to the doctors where they thought it might be due to the particular milk he was having. So they changed his milk on four different occasions. When that didn’t work they thought he might be lactose intolerant, so changed his milk again.

At five weeks there was really no improvement. We saw Freddy’s health visitor who wasn’t  happy with how yellow Freddy was so she rang the doctors at our local A and E and they saw us straight away. Within a day of being admitted onto a ward, we were told Freddy had a problem with his liver and we would be transferred straight to Kings College Hospital where, after a solid day of tests, they diagnosed him with biliary atresia.

Mine and my husband’s heads were just spinning as we had never heard of this disease before. We couldn’t get our heads round the fact that we already had four children and they were all healthy so how come our poor Freddy had something so bad? He underwent a Kasai procedure  at seven weeks old and initially things looked really promising.  His jaundice disappeared so quickly, the consultants were convinced he wouldn’t need a transplant and if he did it would be more likely to be years ahead. Unfortunately, it was not to be plain sailing. When he was 18 months old, his bowel got stuck to his scar tissue and he needed surgery to put things right and as the months went by he had recurring bouts of cholangitis. Each time he had to have IV antibiotics and we would spent weeks in hospital.

 

By May 2019, the view of the doctors was that Freddy would, after all, need a transplant sooner rather than later so we went to Kings for our assessment. It was so much to take in, meeting new doctors, surgeons and transplant coordinators, that we did struggle emotionally. We were feeling so guilty that we were putting our little boy through a major operation even though we knew he needed it to survive. We also felt guilty about leaving our other three children with their nan and grandad when they should have been with  mummy and daddy. Although if it wasn’t for their grandparents always being there for us and helping look after our other children, I have no idea how we would have got through this.

Nearly a year to the day of him going on the transplant list, we got the call to say they had a possible liver match. It’s such a mix of emotions. On one hand, I was happy to get the call and I was thinking ‘this is it’ but at the same time you don’t want to get your hopes up in case it’s not a match. Of course this was the height of the pandemic which added further to our stress.  When we got to the hospital we had to go straight into isolation.  I remember the doctors coming into our room and saying it would be hours before we would find out if the liver was a match but thankfully within two hours they had confirmed that it was and we were walking him down to theatre. The next six hours were a bit of a blur. Freddy’s dad, Michael,  wasn’t allowed to stay in the hospital while the operation was taking place and I didn’t want to be on my own so we went and tried to get some sleep in our car in the car park. I remember just praying he was going to make it through and I just wanted to hold him again.

 

It was a relief to get the call to say that everything had gone to plan. Freddy had received his gift of life and I couldn’t wait to see him again. Although we had been warned about what Freddy would look like when he came out of theatre, nothing can prepare you for seeing your hopeless boy laying on a bed with tubes coming out of everywhere. The first thing my husband said to me was ‘look at his belly  – it’s completely flat.’ We had spent three whole years of Freddy’s belly being so distended that it stopped he from meeting milestones for walking and crawling as it used to get in his way. This was a dramatic change.

Sadly because of the restrictions, Michael was only allowed to see him once then he had to leave us which broke my heart. I found it really hard to be on my own and it was hard for Michael too knowing that the next time he was going to see his little boy again was when he would pick us up to go home. We were so thankful for camera phones as the video calls were probably what got us all through it.  However, although I had been told we could be in hospital for three months following the surgery, his recovery was so quick we discharged within 15 days and he continued his recovery at home. His siblings were so pleased to see him!

It was fascinating to see how Freddy’s food habits changed after his transplant. He used to  absolutely hate mayonnaise and cheese but after transplant he wanted cheese and mayo on everything. And he loved bananas before his transplant  – now he doesn’t really eat them.

Once everything had calmed down and we could think straight again, I started to feel guilty that, as we were celebrating our little boy getting his gift of life, a family were mourning the loss of their loved one.  So every anniversary and Christmas we light a candle and remember the family of Freddy’s liver donor. He saved Freddy’s life and we will forever be grateful.

Four years on, Freddy continues to do well. He does suffer with some bowel problems and we’re trying to establish whether this is connected to his liver or a separate issue. He was also diagnosed with ADHD in December which is just another hurdle for him to overcome.  But we know how lucky we are to have a happy seven year old, who most people would never guess had been through such trauma. He’s hit all the usual milestones now and his favourite thing to do is play darts, which he’s pretty good at! He is also now a very proud uncle to his baby niece Sienna, whom he idolises.

On the subject of family, I must give a mention to Freddy’s siblings Bethany, Brooke, Charlie and Poppy. They had their lives turned upset down, parents missing for weeks on end and not once did they ever moan. Then throughout Covid, even when the schools were open, we had to home school them so that Freddy could be isolated. Again, they just accepted it all and got on with it. I’m really proud of them all.

 

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