First-time parents Demi and Kieran knew that something was wrong with their baby boy, despite assurances that they were over-worrying. Their instinct turned out to be correct, as Demi explains here.
Bobby was born on 1st September 2015. He was our first baby we were super excited to become parents. No one could have prepared us for what was to come.
When Bobby was born he was a little jaundiced but as he was six days late, and I had also become poorly during labour, meaning Bobby had to have IV antibiotics as soon as he was born, the hospital put it down to all of these factors. They put Bobby under the special light and we stayed in hospital for a few days in hope that it improved. And it did, or so we thought, so we were able to return home and start being a proper family when Bobby was a week old.
We got Bobby weighed the following week with the health visitors, and at this appointment we raised concerns that we didn’t think he was gaining weight very well, he still seemed a little yellow and that his stools were pale. But no one seemed concerned and we were sent on our way.
With our parental instinct and something not sitting right with us, we made an appointment with a doctor the following day, who just told us to put Bobby in the sunshine some more and his jaundice would fade, and that we were first time parents who were over worrying. Having no experience of being parents, we thought they must be right, so we just tried to enjoy our little boy.
It wasn’t until we saw a different health visitor when Bobby was nearly four weeks old, that they saw what we had been seeing and actually listened to our concerns. This health visitor referred us to hospital for a specific blood test to check Bobby’s bilirubin levels. The hospital got us in later that day, ran a load of tests and kept us there until the results were in. The results were alarming. Our local hospital had an inkling of what it may be but as they weren’t liver specialists and they couldn’t determine the sure cause, they referred us to Birmingham Children’s Hospital.
We travelled three hours the next day to Birmingham. We arrived at Ward 8 where we unknowingly entered a whole new world of liver disease. A couple of days later, after scans, blood tests and other investigations, our four week old little boy got taken to theatre, which is where he was diagnosed with biliary atresia and underwent the Kasai procedure.
He recovered well from this and he was ready to be discharged not long after, which was great, and although I struggled to adapt without the comfort of all the incredible nurses, doctors and staff that we had met during our two weeks in hospital, we were ready to hopefully settle back at home with our baby.
Bobby had to have weekly blood tests and weight checks locally and was due to be seen by his consultant in Birmingham in two months. It was at this appointment, on 22nd December 2015, just before Bobby’s first Christmas that we were told, due to his bloods not improving and his weight gain being non-existent, that unfortunately they believed the Kasai procedure had failed, and Bobby would need a liver transplant in the near future.
Thankfully we were able to return home for Christmas with a date booked in the new year for Bobby to undergo a transplant assessment. This involved a week full of intense meetings, tests and information. By the end of it, however, Bobby just wasn’t well enough to go home, and we were told we would be in hospital for a while.
It was decided he needed to be listed for transplant, but he also needed to gain weight to ensure he was strong enough for such a big operation, so they began to feed him by TPN. After nearly three months of living in Birmingham Children’s Hospital, three hours away from home, Bobby became strong enough for us to be able to go home for a while and wait.
During the week of the transplant assessment, both Kieran and I had been told that being a live donor was an option. Neither of us hesitated to make the decision that if we could, we most definitely would donate no matter the risks, if it meant we could save Bobby, and give him a second chance at life. We both underwent some tests as soon as we were able and it was determined that as I was smaller built and Bobby needed a smaller liver as he was so tiny, I could potentially be his donor. This is when I started the process of more in-depth tests to make sure everything was good enough for Bobby to have a piece of my liver if the call didn’t come in the meantime.
After one false call and some hiccups due to a couple of issues with Bobby’s veins, on 22nd June 2016, I went into theatre in the Queen Elizabeth Hospital in Birmingham to have a piece of my liver removed, whilst Bobby went into theatre in Birmingham Children’s Hospital to receive that piece of liver.
We both recovered okay, I had a few issues with pain and medication effects but the worst bit for me was not being able to be beside Bobby as he was recovering, because of this and because I was so determined to see my baby, I managed to get myself well enough to go and see him after just a few days. A couple of days after that I was discharged. Bobby did amazingly in his recovery and was discharged after just two weeks.
Since transplant Bobby has been doing really well, with minimal admissions. He does unfortunately suffer with portal vein thrombosis, for which he has endoscopies every one or two years, thankfully his varices have never caused any issues. Also, at his five- year post-transplant check-up, they found him to have hepatic artery thrombosis. However nothing can be done to solve this issue except close monitoring, so Bobby has blood tests locally every three months which Birmingham review, and then every year we take a trip to Birmingham for his consultant to see Bobby face to face and for him to have an ultrasound. Other than that Bobby seems as healthy as any other child and we’re so grateful for this.
I don’t feel that his liver condition has impacted his education too much. He may miss a morning or an afternoon for an appointment, but I try and book the longer ones in school holidays. Also, we were fortunate that the majority of his treatment happened when he was quite young before starting school.
With activities, we’ve always said that we would allow Bobby to do as much as a child that hasn’t had a liver transplant could do. The way we see it, he was given a second chance at life and we believe that he should be able to live that life as he wants, doing the things he loves, without us restricting that, which is what we’ve done ever since he was transplanted. Obviously, we as his parents take precautions where we need to keep him safe and well and Bobby understands there may be some things, more so as he gets older, that he may have to think extra carefully about, but for now we live each day as it comes and make sure we live it to the full as we know how quickly things can change.
Bobby loves drawing, reading books and going fishing with his daddy, as well as playing with his friends and his younger sister and brother.
We were first introduced to CLDF the first time Bobby was first admitted onto Ward 8. We were given information packs and I remember speaking to someone too. From that moment anyone we have come into contact with from CLDF have helped us massively, from the packs they provide for us to hand to nursery and school to always being on the end of an email if there’s any other support we need. The Facebook page is also very informative too which is a great help. We’ve been so grateful to CLDF that we fundraised for them back when Bobby was first diagnosed and would love to one day do it again.
I also want to add that another form of support that has helped me is the ‘Liver Mums’ Facebook Page. Obviously dads, grandparents etc can use it too, but for me having that group to post in, to be able to talk to others going through similar has been a life saver for the last 8+ years and we have actually made friends with other families too which is lovely because they just understand.
