A little bit about me and my family. My name is Polly. I’m a little bit weird (in a good way), I’m obsessed with food, I love dancing, and I’m known to be a bit of a control freak. I’m married to a wonderful, football-crazy man, Ross, and we have a little boy, Hugo, and a slightly chubby cat, Ronnie. We live in a lovely seaside town in Kent and enjoy quite an easy-going, simple life. On the whole, we count ourselves pretty lucky and we’re very happy.
In general, the first few weeks of Hugo’s life were pretty run-of-the-mill. He drank milk. He cried. He slept. He pooed (a LOT). We were tired, overwhelmed and incredibly in love. We felt very grateful that not only had we created the most gorgeous baby boy we’d ever seen, but also that he was so easy.
When Hugo was about seven weeks old, I noticed a change in his routine. In particular, his nappies changed. His poo went from the bright English mustard yellow we learnt about in antenatal class, to a very pale cream. I did the usual checking – Google, Baby Centre and Mumsnet – but didn’t come across anything that worried me in particular. But as most new mums do, I decided to check with the doctor. I fully expected to be laughed out of the surgery as a neurotic first-time mum; I even made plans to go to a local playgroup with a mummy friend later that morning.
How I wish that is what had happened.
Instead, we were referred from one hospital to another, eventually ending up at (what is now our local) Margate. Bloods were taken, scans were done. Doctors spoke around us, but nothing meant anything to us. We didn’t have the slightest idea about what bombshell was about to hit us.
When the consultant finally came along at 8pm that night, he… well, I can’t really remember what he said. I recall he mentioned the words “specialist liver unit”, “London”, “bile flow”, “liver disease”, “surgery”. Other than that, I only remember a whooshing sound, and the distinct sensation that I was falling. We were told that Hugo would be referred to King’s College Hospital in London, and that it was vital that we had an appointment that week. We didn’t know what would happen beyond that. All we knew is our world, our little bubble with our new, perfect little boy, had suddenly changed beyond all recognition.
What followed was nothing short of a whirlwind – something I can now see as a bit of a blessing, simply because we didn’t have the time to stand still and really think about what was happening and how our lives were changing. We went to London for an assessment and diagnosis; more bloods, more ultrasounds, and a biopsy later, it was confirmed he had Biliary Atresia. We were told to expect a call within a week to book him in for urgent surgery; we didn’t expect it the very next day. We rushed around to get prepared – it was like packing for the worst holiday we could imagine.
Just ten days after I first took Hugo to my GP with pooey nappy in tow, he was taken down to theatre at King’s for major surgery.
The shock really hit me for the first time when we saw Hugo in recovery. Our ten-week-old baby boy was lying in a bed surrounded by wires, machines beeping all around him. We both suddenly felt like we’d run a marathon – it physically hit us like a ton of bricks. But, almost immediately, we both also felt a massive rush of relief – the anticipation of how awful it would be was gone; we’d jumped the first hurdle, and we were on the road to making him better.
Happily, we had Hugo back home for his first Christmas. It wasn’t really what we had pictured, as he was on intensive medication for the first few weeks (nine separate medicines in total, to start with), and because of this he had a suppressed immune system. We had to avoid big crowds and illnesses – not an easy feat during the festive season. However, we maneuvered around the family as best we could while keeping him as wrapped up in cotton wool as we could.
For three weeks, Hugo steadily made excellent progress. His poo was always very dark, he was gaining weight well, and his jaundice faded away until even the whites of his eyes had lost their creamy-yellow hue. We had regular contact with the Clinical Nurse Specialist and Dietician at King’s, and they were all happy with our accounts of his progress.
We had been told about several side effects of both his illness and the operation that we needed to look out for. So when Hugo woke up one morning in mid January with a fever and looking yellow-ish again, my stomach sank through the floor. Cholangitis. I just knew it. We had just got to the stage where his immune system was back up and running, and we’d been getting excited about being able to take him out and about, to baby groups and just even to Tesco. Have a bit of normality. But we instead packed up and headed to our local hospital, where he was given seven days of IV antibiotics to try and kick the infection.
During his stay in hospital, his liver symptoms got worse again. His jaundice came back, and his poos lost all colour again. Then, shortly after he was discharged from QEQM, we had his first check up at King’s. It didn’t go well. It was heartbreaking. One of the really frustrating parts of this illness is that there is never a prognosis (we’ve tried REALLY hard to get the doctors to give us one. They simply can’t). The worsening of his symptoms could have been caused by the infection he had picked up, or it could be the first indication that, in spite of the early good signs, his liver was failing and that he could well need a transplant (statistically, only about 25-30% of Kasai operations are successful; the rest result in a transplant). We were basically told that the best news we could hope for, in the immediate future at least, was no bad news – all the while we weren’t being told he would need a transplant, we could be positive. Or, at least, hopeful.
Not one to do things by half (he must take after me…), Hugo has since had a bout of gastroenteritis, a couple of colds, and has increased ascites. We’ve been in and out of hospital every week since he first took a turn for the worse. He’s had several albumin infusions and countless blood tests – to the point where he’s nearly run out of accessible veins. His bilirubin level (the jaundice indicator) is currently higher than it’s ever been. But on the flip side, his poo is regaining its colour. So we are seeing steps forward in some respects, while feeling like we are doing nothing but move backwards in others.
For me and Ross, we’re still learning how to cope with everything that has happened, and might happen. Having to come to turns with the fact that we can’t protect him from this, that we can’t influence what is going to happen, has been really hard. It goes against every basic instinct you have as a parent. So having to totally relinquish control of our lives to his illness is difficult, to say the least. We’re developing coping mechanisms and learning not to read too much into his changing symptoms. I’ve realised that being too hopeful is detrimental to my own ability to cope; being perpetually disappointed by the fact that his jaundice hasn’t disappeared when I wake him every morning will just slowly send me mad. So we’re just trying to be the upbeat and normal parents that Hugo needs us to be – the same ones we were before the bottom fell out of our world. And we’re counting ourselves incredibly lucky that he isn’t suffering directly as a result of the liver disease; he’s not in any pain, and he’s still the smiling, happy, cheeky chappy he’s always been. We know it could be so much worse.
That’s enough to keep us going for the moment.