Edie's Kidneys

Edie

I wanted to talk to you about Edie, but not really about Edie, about her kidneys. To title this piece 'Edie' and then bang on about a very small part of her physiology, would be unfair. They have little to do with who she is, but they do have an impact on my relationship with her, my other children and the way I feel about myself as a mother, so it's something I wanted to talk about.



This little girl here is our Edith/Edie/Weany Bean. She is a typical (is there such a thing?) 18 month old bundle of energy and enthusiasm. She is learning new things all the time and is generally a very happy little girl. Not really a baby any more, but I can't quite bring myself to call her a toddler, mostly, I suppose, because I intend for her to be our last baby, so I'm more reluctant than ever for her to grow-up. She is starting to talk, she has a wonderful personality and I couldn't love her more than I do (well, maybe if she slept all the way through every night and didn't wake up until 7 every morning, but nobody's perfect!).

There are 2 things that set Edie apart from my other 2 children. 1 is that she is our 'rainbow baby'. If you don't know what that means, it means she is a baby born following a previous miscarriage. I do not love her any more than her sisters for this fact, and I don't want to in any way ever define her by what came before her, but my pregnancy was definitely more nervous and my understanding of how precious and delicate life is more accute. The second thing about Edie is her kidneys.

Before I start I want to state, for the record, that I know what we have been through is relatively minor, compared to the ordeals and struggles faced on a daily basis by many, many people. I never had to fear that Edie may die, or that she was going to be life limited, and for that I am eternally grateful.

Early indications

One of the better internet diagrams I could find showing
what a duplex kidney can look like!

When I was 34 weeks pregnant, I had to have a growth scan, because I was overweight and because they believed I may be carrying a large baby (incidentally, she was 9lb 2oz at birth, so I guess they were right!). During the routine screening the sonographer noticed that one of the baby's kidneys was enlarged. She said it may be hydronephrosis (kidney swelling), which can occur in the womb but resolve itself after birth, or there may be a duplex kidney system. She said we would need to speak to a paediatrician, but her understanding was that duplex systems are relatively common and don't usually need more than monitoring and sometimes long-term antibiotics to help prevent infection. At this point I knew nothing about duplex kidneys and I went away and googled stuff, I was concerned but not too worried, because it seemed likely to be something that wouldn't cause too much trouble.

The diagnosis

Following Edie's birth, she was given an ultrasound in hospital which confirmed she had a duplex kidney on the right side. The pictures I have used are obviously not of Edie, but they give you an idea. In basic terms it meant that she had almost 2 kidneys on the right and a normal sized kidney on the left. In addition, both parts of the right kidney had a ureter (the tube the urine drains into the bladder through). Edie was put on prophylactic antibiotics and we were told to watch for signs of infection. We were also told that she would need a couple of further tests (at about 8 weeks old) to check how well her kidneys were working, but that her urine output was fine. Again, so far, nothing to really panic about.

Following the 2 horrible tests (one involving having to hold my baby still whilst a team insert water through a catheter into her bladder, and take xrays to see if the water flows up her ureters into her kidneys, the other a MAGIII scan that I'll let you Google!), we were informed that Edie had grade 4/5 vesicoureteric reflux. This is when the urine from the bladder is able to flow back up the ureters and into the kidneys, thus increasing the risk of infection significantly. If I tell you that reflux is graded from 1-5 and 1 is good, you'll understand that at this point, I started to think that this might not be quite so straight forward after all.

The infections

That's right, that's a plural 'infections'. The thing with Edie's kidneys, in particular, was that the reflux and the double ureters meant that infection was always a risk. The antibiotics she took every day were supposed to prevent infection, but they didn't work. Edie's first UTI was a classic presentation (high fever, off her food etc) and occured a few days after one of her tests. I took her to out of hours GP thinking that she had the same bug the rest of us had had, but mentioned that she had had a catheter earlier in the week as part of this test. They referred us to out local paediatric assessment unit. I remember texting my husband, still convinced it was nothing serious, telling him it was annoying that we were being made to wait and had to give samples etc. It was only when the doctor said they may need to perform a lumbar puncture, that I knew they were really worried and that made me start to panic a bit. Luckily for Edie, they managed to get a urine sample out of her and immediately could see that that was where the problem was (the consultant actually said 'I just dipped it and the stick lit up like a Christmas tree). OK, so, UTI, not too serious, right? Wrong. They needed blood tests, and they said she needed I.V antibiotics, and they said she needed to be admitted to the ward. I have no words to describe how heart-wrenching it is as a parent to have to hold your 8 week old baby still, while a very lovely doctor tries to cannulate them. Or how it feels to see them have their foot squeezed for blood. Or how your heart sinks when the cannula that worked last time, has failed and they need to redo it, five, fucking, times. The had hoped that she would be able to come off the I.V after 3 days, but as it turned out, the infection had spread to her kidneys and to her bloodstream, and she needed a full 10 day course. Thank God for community nurses, we were allowed home after 3 days in hospital.

Edie's second infection is the one I find hardest to talk about, because it went on untreated for so long, because I didn't realise she was sick. Actually, I should say no one realised she was sick. At about 5 months old, Edie went off her milk. She was cranky, failing to eat much, awake more in the night, and being sick after many of her feeds. I thought to start with that she may have had a bug that was lingering, I checked her temperature, and it was fine, but she didn't improve. I took her to the Health Visitor, who made several suggestions, including weaning her, because maybe she was ready for food. Nothing really rang my alarm bells, you know the ones you're meant to have as a parent? The 'something's not right with my kid' alarm? Nope, nothing from my gut or my brain to suggest to me that something might be going on. I suppose, looking back, to me she had only ever had 1 infection and that was probably caused by the test that she had had shortly before hand. I had kind of assumed that the antibiotics were doing there job and she wasn't at risk. I was wrong. It was only when she started to physically lose weight that I started to worry. I took her back to the Health Visitor (still thinking it was something about weaning or reflux or similar) and she referred me to the GP. The night before the GP appointment I saw Edie have a wee in the bath and noticed that it was cloudy.

My Edie, happy and cheeky, like she should be

And so we ended up at the Paediatric Assessment Unit, and then back on the ward. The doctors were astounded by how bad the infection was. Edie was really very poorly. Her sodium and other levels were all over the place. They did repeated blood-tests, put her on fluids and started I.V antibiotics. We were in for around 4 days. However, within a week that miserable, fussy baby had turned back into my wonderful, happy, bouncy bundle. And only then did I realise how horrible she must have been feeling. I cannot explain the guilt I still feel because I did not realise that she was sick. I try and tell myself that the decline in her health and appearance and personality was so gradual, that it was difficult to spot, but I still feel that I should have known, and almost as though I neglected her. It is so easy to see now when I look back at photographs of her: her colouring was all wrong and her eyes were sunken, but it was such a gradual process that I didn't see it happening.  I love that child more than life and yet I feel like I failed her. And by failing her, I failed my family because I had to be with Edie and not with my other 2 wonderful girls. I had to miss a pre-school trip, cancel plans, and wasn't there to tuck them into bed at night. My girls needed me, but Edie needed me more. My husband was amazing at handling things at home, and the kids came to visit Edie. I even had time at home while hubby sat with her in hospital, but ultimately, I wanted to be with her and that meant not being with my other children. It's so hard to be torn between your children. I think I might have to write a separate blog about guilt in parenting, because I could go on for far too long about it here!

Following this infection, I bought urine testing strips from the internet and became a wee-wee testing fanatic. And low-and-behold if she didn't keep getting infections! Thankfully, when caught early, a good whack of oral antibiotics would usually do the trick, and so we went on for a few months, waiting on an appointment with a paediatric urology specialist, who has a clinic at our hospital once every 2 months.

The Surgical Option

So, from a 34 week scan that was 'probably nothing to worry about', to tests that were 'hmm, that's more complex than we thought' and several serious infections, we finally come to a specialist appointment. The consultant we saw works out of Great Ormond Street Hospital, but we first saw him locally. He looked at all of Edie's history and test results and almost instantly recommended surgery. He said they prefer to operate on children when they are older (bigger children = bigger organs and less fiddly), but that Edie was just going to keep getting sick and was at risk of causing scaring to her kidneys. By the time we had got to this appointment, we had already sort of guessed that this might be suggested, and had made the hard decision to agree to surgical intervention. It may look like a no-brainer, but the idea of handing your baby over to someone who is going to knock them out, cut them open, and mess about with their internal organs, is always horrendous, even if the outcome will be life-changing. 

I think this is the most heart-
wrenching photo I have ever taken

So, we agreed and were sent away being told that we would hear from them shortly. And we did, and Edie underwent a load of tests and then ultimately surgery at Great Ormond Street Hospital in October 2015. The surgery performed was a re-implantation of ureters and excision of ureterocele ("A ureterocele is a congenital abnormality found in the ureter. In this condition called ureteroceles, the distal ureter balloons at its opening into the bladder, forming a sac-like pouch. It is most often associated with a duplicated collection system, where two ureters drain their respective kidney instead of one" Wikipedia). The amazing team managed, in 2 hours, to move the ureters into a better position, so that they now enter the bladder in a way that prevents urine from being able to travel back up and into the kidneys. They also removed the ureterocele, which more than likely contributed to the reflux. And guess what? Not a single infection since :-) We have 2 more appointments (further scans and a consutlant to see), before we hope to be discharged. Edie can go about her life never remembering anything about any of it.

When I think about what we went through, the emotions and the trauma and the strain it put on our family, I don't know how we managed to cope so well (although I believe my anti-depressant/anxiety medication helped A LOT!!). But I think, perhaps, that the emotional side of this ordeal, and the way it has impacted on me and Edie and our family, is a blog for another day; this one is already far too long! But now at least when I feel like getting all emotional, I can refer back to this blog for the technical details!