Case studies

We were given the best Christmas present we could have wished for

When we found out we were having a baby, it was such special news. The thought of adding to our family was so exciting. The pregnancy went well without any medical complications, just morning sickness, cravings and the usual pregnancy symptoms. I went into labour on 10 August 2010. The labour went well, apparently. I was just focusing on the job in hand.

I remember it so clearly, Charlie’s first appearance into the world.  Feeling so proud of myself I couldn’t believe that he was finally here making his debut into the world. I recall looking at my husband, Ben, in pure amazement, there is nothing quite like that feeling of seeing your baby for the first time.

We quickly learnt that being a parent was the hardest thing we would ever have to embark upon. Ben noticed that Charlie was making a grunting sound when he was breathing and spoke to the midwife to which she said there was nothing to worry about, but they were going to take Charlie up to the Special Care Baby Unit.  Ben and I were both shocked. 

I was then taken to my room on the ward, Ben went home and all three of us were alone, with Ben and I having so many unanswered questions. Being apart was so hard, we had just started on the biggest journey of our lives and things hadn’t begun how they were meant to. 

Ben came back the following morning and we were told that they had to carry out some tests, which went on for the following week during which time Charlie was having problems with his blood sugar levels, as well as being severely jaundice. This eventually led to the doctors carrying out an ultra sound on his abdomen. The ultra sound showed that Charlie potentially had a problem with his liver. The following day Charlie was transported in an ambulance in a machine that looked like a spaceship to Birmingham Children’s Hospital nearly 4 hours away from where we live. 

It was a long journey to Birmingham, full of anxiety, and fear of the unknown.

At the hospital, Charlie was moved to a little side room, with a huge cot in it, and not much room for anything or anyone else. The nurses explained that one of us could stay overnight with Charlie however the other would have to leave.  They then explained that they would try and get us a room at a local House which was a 5 minute walk away on the hospital grounds, she went on to say the House provided accommodation for parents whose children were in the hospital. They contacted Ronald McDonald House Birmingham and they had a room available for us within an hour of the referral.

To be honest, I wasn’t convinced that this was such a good idea and the thought of leaving Charlie was painful and riddled with guilt. 

Ben went over to the House and took our bags.  I remember him coming back upbeat and surprised about how lovely the accommodation was, and that he felt that it was important that we get good night’s sleep. Leaving Charlie that night was so difficult, I felt we were letting him down, however we were able to make contact directly to the ward from our room. We rang across almost hourly.

After about a month in hospital we had made a sort of life for ourselves, a routine; on reflection, this was our way of surviving in an extraordinary set of circumstances. We would take him for walks up and down the hospital corridors in between blood tests ultra sounds and examinations. The House had become our base, somewhere to freshen up, and provide us with some much needed comfort. When Charlie was well enough we use to go to the House with him and relax in front of the television and for those couple of hours we were able to act like a normal family in their own home. That was priceless.

After weeks of uncertainty and feeling like we were losing our minds, Charlie was deteriorating and we as parents were helpless. Dr Hartley, his doctor, told us that they were looking at two different possible diagnoses: a neroblastoma, which is a form of cancer, or an issue with the cells inside his liver which would mean he would require a liver transplant. I became numb. We cried as a couple, but grew stronger as a family. We knew we had to be strong for our little bear. Charlie made it easy for us all, no matter what our little boy felt like he always had a smile on his face!
One of the tests that took place was a biopsy on his liver, which highlighted to all how poorly he was. As well as having internal bleeding during the routine test, Charlie’s body couldn’t cope with the trauma of this and he stopped breathing resulting in an admission to Intensive Care, where he remained on a Life Support Machine for a week. 

We were devastated, heartbroken and for the first time feared the worst. However, Charlie found an inner strength and to the doctor’s surprise pulled through. It was at this point that we were informed that Charlie needed a liver transplant. 

We lived by the phone scared to miss a call. After a month of torture we finally received one at 22:00 on Friday 5 November. The next day, Charlie had his surgery. About 5 hours into the operation the donor co-ordinator called us to let us know how things were getting on in theatre. By all accounts it was difficult and a very complex procedure. We were told a few days after the operation that the surgeons had considered removing Charlie’s spleen and that they needed to replace nearly 8 times the amount of blood in his body. However despite all the complications the surgeons had succeeded.
For the next month we remained in intensive care, in relation to is liver all the blood tests and scans were very positive and the liver team were really happy with his progress. 

We had however stumbled across another issue. Due to how week Charlie was he was now struggling to come off the life support machine, and on two occasions required the input from the crash team, and this resulted in him being placed back on the ventilator. 

The doctors had started the assessment for Charlie to have tracheostomy, Ben and I pleaded with the doctors to give him one last shot at being taken off the life support, and they agreed. Then exactly one month and to the hour of when Charlie first went down for his transplant, Charlie decided enough was enough and coughed his ventilator out, to everyone’s shock. Charlie was breathing soundly and just needed comforting from his mummy and daddy.  That night was the first time in a month we held Charlie without any wires or tubes attached to him, it was like the first we held him when he was first born.

From this things moved so quickly, and we were given the best Christmas present we could have wished for. On the 20th of December we made our way home.

Charlie has continued to thrive, and is now 15 months old, nearly walking and an extremely happy, cheeky and playful young boy.