Ilias developed a fever in the small hours of Tuesday morning. It was oscillating between 37.5 – 38.75°C, so we called the doctor’s post (our own doctor is on holiday) and agreed to bring Ilias in for a check-up. You can’t be too careful with such a young baby.
The doctor examined him, then told us he saw nothing untoward. We should keep an eye on him and make sure that he stayed hydrated. We agreed to call the next day with a status update.
Wednesday morning, Ilias’ fever was subsiding. It was below 38°C and steadily dropping by the hour. Good news, we thought; he was on the mend.
We called the doctor, as arranged, and gave him our update. He asked us to bring in a sample of pee, so that he could test it. Ilias wasn’t required to attend.
I biked the bottle of pee over to his surgery at 11:30 and noted that it was cloudy. The doctor made the same observation, then ran a test on it and informed me that there was a possibility that Ilias had somehow sustained a urinary tract infection. He made an appointment for Ilias with a paediatrician at the VU Medisch Centrum for the same afternoon.
The doctor’s manner as he wrote out the referral for Ilias was laconic, so I thought we were going to the hospital for what amounted to a second opinion. I expected the paediatrician there to look at the temperature chart we’d been keeping, see that things were quickly returning to normal, and send us home with the advice to keep an eye on things for a couple of days.
That’s what we expected. Here’s what actually happened.
After arriving at the hospital and registering Ilias as a first-time patient, we reported to the Paediatrics department, where we had the appointment. We were soon ushered into a room, where a female doctor joined us shortly afterwards.
This doctor informed us that she wanted to insert a catheter into Ilias’ tiny penis in order to extract some pee for a urine test. This was an unwelcome opening salvo and quite unnecessary as far as we were concerned. Fuck that!
We told her that Ilias can pee on command, which is true. We hiss in his ear and he starts to pee. You can scoff, but it has to be seen to be believed. He does this reliably.
Unfortunately, the doctor then partially undressed him to examine him with a stethoscope, causing him to pee a large amount into his nappy. This left him with nothing left to pee for the sample.
We continued to protest against the idea of a catheter and managed to buy ourselves some time with the jar of pee we had brought with us. The doctor was first afraid that the jar wouldn’t have been sterile when we used it, but we explained that it had been cleaned with boiling water and this was then deemed acceptable.
We were soon joined by a nurse, another doctor and a woman whose job it was to draw blood. Each began to chip in with observations and advice. The pressure on us was quickly ratcheted up and an obvious, concerted effort was being made to make us succumb to the will of the white coats.
The precise chronology of events becomes a blur at this point, because things suddenly started to move very quickly.
In my recollection, a couple of very awkward, painful and extremely stressful attempts at drawing blood came next. Ilias screamed and squealed like a piglet as the needle was pushed into his tiny vein.
After what seemed like an eternity, blood was extracted, the ordeal finally ended and we were sent to another building, accompanied by the nurse, to await an ultrasound scan of Ilias’ nether regions.
That was a relatively relaxed affair, by comparison, but turned up a slight thickening somewhere near the renal pelvis.
Back on the other side of the hospital, we were confronted with the blood and urine test results, which, together with the ultrasound, all confirmed the diagnosis of a suspected urinary tract infection. We were informed that the hospital wished to admit Ilias and immediately begin administering a course of antibiotics.
At that point, things started to take on a surreal element, as we found ourselves participating in what felt like a theatrical production with us cast involuntarily in the leading roles.
A heated discussion ensued. We stressed that Ilias’ fever was dissipating and explained our stance on antibiotics, namely that they wreak havoc on intestinal flora, particularly in such a young child, and are an absolute last resort, as far as we’re concerned.
After being given some time alone to consider our options, we were interrupted and politely but firmly informed that we actually had no options, so we may as well acquiesce and expedite the proceedings. We sought clarification, just to be sure there was no misunderstanding, but we had correctly understood their meaning. If we refused treatment for Ilias, steps would be taken to have our parental authority revoked, so that he could be treated regardless. Visions of being restrained by security guards or police officers began to flash in front of my eyes. I suddenly felt as if I was playing the role of a Jehovah’s Witness in some bad movie.
At this point, it dawned on me that they thought Ilias might actually be going to die. When I said as much, the language the doctors’ used became steadily less flowery until they admitted in no uncertain terms that, yes, he might die if we didn’t act soon.
It was a lot to take on board. After all, just a couple of hours previous, we had been of the opinion that our son was shaking off the remnants of a two day fever and was almost back to normal. His behaviour was that of a healthy baby. It was rather hard to accept from the assembled group of people that he was actually so direly in need of treatment that a court order might be necessary in order to guarantee that he receive it.
Fast-forwarding somewhat, we consented to the treatment, which was to have been my decision anyway, irrespective of the duress. Sarah strongly felt that she had been pressurised into the decision, which she had, but I was too alarmed and afraid by then to feel much indignation. I just wanted my son to remain alive.
Multiple failed and very painful attempts were made at putting in an infusion needle, but they just couldn’t tap into one of Ilias’ minuscule veins. He screamed and writhed in pain at each intrusion of the needle into his tender young flesh. It was absolutely fucking heartbreaking to listen to his helpless, tortured squeals. Every nerve in my body was telling me, as his parent, to get up, kick the shit out of these fuckers and end his torment there and then.
Cutting a long story short — I need to sleep — Ilias has been admitted to hospital and now has an infusion needle in his scalp, after the previous line in his foot also failed following a single infusion. He is being given an infusion of wide-spectrum antibiotics three times a day.
Sarah is with him 24 hours a day and he — and thus she, too — is expected to remain in hospital for at least a week.
Today (Thursday), Ilias no longer has a fever and appears to be a perfectly fit, healthy baby. From the doctors’ point of view, though, they got to him early and he is responding to the treatment.
It will be a few days before the blood culture reveals which bacteria are present in his blood. At that point, they’ll know whether he has been on the most effective course of antibiotics, or whether they’ll need to start him on a new course of more directed medicine. Some antibiotics can be administered orally, others have to be given intravenously; so, depending on how well chosen the current drugs are, and whether or not any new antibiotics to be taken a few days from now can be given orally or not, the duration of Ilias’ stay in the hospital will be determined in due course.
That still leaves the question of how he developed this infection in the first place. No anatomical abnormalities were found during the ultrasound, but a close inspection of his valves has not yet been conducted. It could be that one of these valves is leaking fluid in the wrong direction. Equally, it could simply be a case of extraordinarily bad luck, with a fleck of faeces having found its way into Ilias’s urethra, possibly via a particularly full nappy.
There are tests that can be done to determine the presence of faulty valves, but these haven’t yet really been discussed. It’s still early days.
Eloïse and Lucas have spent their first night without their mother, which, all things considering, went very well. The whole family, including Sarah’s mum and dad, visited Ilias and Sarah in hospital today. Naturally, that’s a trip we’ll be making every day until we can bring them home.
I’ve left out a lot of detail from this story, but with a wife and mother in hospital and two children to care for at home, there aren’t enough hours in the day at the moment.
I’m keeping an album with photos of Ilias’s stay in the hospital. The photos don’t make for very pleasant viewing.
Oh my god!!! So sorry for baby Ilias and all of you!! So hope all will be back to normal really soon and you can put this ordeal behind you. I sure like to know how he got a UTI?
Oh god! Sarah wrote me, I can’t believe it. I told Sarah we had a similar situation with a slightly older Eli (3 months). She had cloudy urine & a fever. She was treated as an outpatient and we had to return to the hospital for a few days until a new test proved that it was not an infection after all. Wish I could be there to visit. sorry you (Ilias) have to go through this