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A star which has been given to me

As we celebrate Mothers’ Day, Gemma shares with us her experience of being a young mum, coping with a very poorly child.

Oliver was born on September 24th, 2008. He was a normal delivery after a straightforward pregnancy. I was a young mum and not unduly worried about things which might go wrong but even so, I had listened to advice, taken care of myself and I was lucky enough to have an amazing midwife and excellent care in my local hospital.

Here is a picture of Gemma and new born Oliver:

My situation at home at the time, however, was less than ideal. I had broken up with Oliver’s dad and relations with my mum were strained too so I spent a lot of time staying with my “Nan”. Oliver was a quiet baby, he would sleep all day, and then at night, he would feed from me for a long time and then cry again once I put him back into his bed. I remember on an early visit from the midwife, seeing that he had lost more than 10% of his original baby weight which did concern me.

Within a few hours I had a telephone call from the local hospital, asking me to bring Oliver to the paediatric ward – the doctors wanted to take further tests. Oliver was put on a variety of different milks, I was no longer allowed to feed him – I was told keep pumping, but very quickly my milk started drying up, I remember vividly that when they were carrying out their tests and he was nil by mouth,  all I wanted to do was bring him to my breast and feed my baby, he didn’t feel like my baby at all, I lost out on all of those precious early days and weeks.

Days fell into weeks being stuck inside the hospital. The doctors knew that Oliver’s blood wasn’t clotting and that his liver function was way off scale, but they needed to transfer him to another city where a team of specialists could assess and look after him. I lost the amount of times I cried when he cried, and how many times he was disturbed for bloods, medication, observations, tests and more tests.

Once we were transferred to RVI Newcastle things began to improve slightly. Our new consultant, Dr Hodges, revealed that Oliver had PFIC. He told us that one day, Oliver would need a liver transplant, he didn’t know when and he couldn’t give me a time frame, I liked that he was honest and that he was there for us, he made me feel safe during this time. It didn’t feel real and often I felt like this was someone else’s life. I blamed myself for Oliver’s liver condition for a very long time, I know now it wasn’t of any fault of mine.

When I was able to take Oliver home again things were different. He was on several different types of medication as well as a prescribed milk. He was very sick every time I would attempt the medication and it took some getting used to. I found that we were frequently in hospital, but I didn’t actually mind – I was happy to know that he was in the care of capable medical professionals and it actually felt like a bit of a comfort blanket.

After we were discharged, Oliver still needed check-ups every couple of days. I didn’t drive then, so I remember falling asleep on the lengthy bus journeys, sometimes supported by my mother, although a lot of the time I did the journey on my own, especially I grew more resilient and confident.

In March 2010 I moved back to Teesside. That year was great for us, I learnt to drive, Oliver learnt to walk, I managed to get a job and I went back to university. It wasn’t easy because I had so much going on but Oliver’s medical appointments were always positive and I think that year I found half of myself. Not all, but at least half.

One morning in the spring of 2011, as I was getting ready for university Oliver said to me that he had a sore tummy, I felt it, and I felt a lump, so I immediately called the GP, who sent me to the hospital straight away. Tests confirmed that Oliver was in liver failure. Within a few hours, we were blue lighted by ambulance to the next city for further tests. Within days plans were being made to transfer Oliver to Leeds where we would go on the transplant list.

Very quickly, Oliver become bed bound. Muller Little Star yoghurts were my saviour as were Pingu DVDs and anything related to Thomas the Tank Engine. Consultants would come and go, and nurse’s shifts would change. I liked to be able to clean and change Oliver, I would often tell the nurses to leave his bedding and I just found doing a lot of things myself helped me, at least I was being useful.

Oliver’s dad came up to visit him and although this made things complicated, in many ways, it did at least enable me to have a break.  I never went back to Teesside whilst Oliver was in Leeds, I stayed by his side and my break was to sometimes walk around the hospital, grab a coffee, and sometimes I would walk out to the centre to escape. The hospital also let me borrow a pushchair and allowed me to wheel Oliver around the hospital, I was able to take him on the top level to get some fresh air and to see the blue sky, and the sunshine.

I was assigned a lady who came to talk to me, and she was great, I felt that I could really chat to her and unload things I wouldn’t to anyone else. I remember I was juggling some work I had to hand in for university and she gave me some perspective.

One day, a consultant came in, she said that she was worried about Oliver, time was not on his side, so she wanted to discuss live liver donation. Both myself and Oliver’s dad went for tests. It turned out that I was a suitable match but just as I was all set to go ahead, a suitable liver did become available, and his transplant was able to go ahead.

His surgery took a long 11 hours and the waiting was so difficult.  When I was finally allowed to see him, he was covered in lines feeding various medication and monitors. Despite all this though, he looked new; he was no longer green or yellow, but peach, his hair was more shiny, my clever brave baby boy.

We were put into isolation immediately, Oliver had to be tube fed for some time in order to provide the right nutrition and promote weight gain. I was shown how to prepare and administer his feed, as well as his drugs, and it was overwhelming at first. Looking back though, it’s amazing how well he learned to cope with his medication. By the time he was three or four he was able to swallow whole tablets and now he takes them like a champ!

Oliver developed an infection a few weeks after his transplant, so it was about a month before I was able to take him home. Unfortunately, I had had to give up my rented home when we were in hospital because I couldn’t afford the rent and I didn’t know how long we would be there for. So, we stayed at my mum’s, until we found a home of our own.

Here is a picture of Oliver after his transplant visiting the National Rail Museum at York:

Sacrifice is the wrong word, but I put my career on the back burner for a while. My mental health was very affected by what had happened, and I couldn’t concentrate on university.

I decided I did want to contact Oliver’s donor family and I sent them family a couple of images of Oliver and a card. I didn’t have any more contact, but at least I was able to express my eternal gratitude for what they had done.

Shortly after Oliver’s transplant I met my now husband. We have now been together over 10 years and have been married eight years in the summer. We have had three children together – we did have genetics testing before our first child was born and I was extremely nervous at the start of that pregnancy, but all was well. We have Jude 8, Matilda 6, and Hugo 3 as well as Ollie who is now 13 and we are lucky to live in lovely South Devon. My relationship with my mum and stepdad is also much better now and I’m certain that’s because of Oliver.

Here is a picture of Oliver with Gemma at her graduation:

Since his transplant, Oliver has continued to thrive, although we do contend with some health issues. He has broken several bones – his arm at school before my wedding day was a particularly hand palm on face moment. He will always have us on our toes! There are also a few orthodontic issues which may need checking once he’s a little older.

Here is a picture of Oliver who broke his arm just before Gemma’s wedding:

Here is a picture of Gemma and her husband James:

In 2021, Oliver celebrated 10 years of his transplanted life, he had his final biopsy, and he will soon be transferred to adolescent services at the hospital. He has remained a patient of Leeds where he was transplanted and three or four times a year we make the journey up there for his check-ups and yearly assessments.

Over the years I have done fundraising for CLDF and would like to do even more as I think that support for families in our situation is so important. With education for example, I never felt that Oliver received proper support for the time he missed and in fact this is a subject I’ll be examining in detail when I begin a research project later this year. Oliver has had some issues with his development, and I have often questioned if his liver condition was a factor. We are awaiting an appointment for him to be assessed by the child development team. I just want Oliver to be able to live a happy, healthy, and successful life.

I think it’s important we continue to raise awareness of liver disease in children because at the time of his diagnosis, PFIC was pretty much non-existent in my town. It wasn’t something that my GP had come across and at times I was scared and very alone. The expertise of the consultants was amazing. And I’m so happy to see that a new drug has been licensed for those children with PFIC. The hard thing at the start was the itching for him, he still has some small scars left from the scratching so it’s wonderful to think that children won’t have to go through that now.

Oliver is a very creative boy who enjoys art and gaming. He splits his time between us and his dad and, after some challenges, their relationship is currently good and that is something which is important to me. Oliver is a very loved child, he is definitely a star which has been given to me and watched over, protected and guided through some difficult and dark times to get us where we are.

Here is a picture of Oliver with his younger siblings last Christmas:

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