Jack's Arrival

The following content includes the medical condition of the author's child and may be difficult to read. Proceed only if you are comfortable with reading this type of content.

Time to write a bit about Jack’s type of chronic kidney disease.

Jack was born with bladder trabeculation, bilateral hydronephrosis and bilateral hydroureter secondary to a posterior urethral valve.

Basically while in utero, the valve in his urethra was semi-blocked with a flap of skin. This meant Jack couldn’t urinate properly, so the only place the pee had to go was back up into his kidneys. However, he was peeing enough that although the kidneys were getting swollen with this excess of pee, the doctors didn’t think intervention was necessary, but still watched him very closely.

At the 35-week mark of my pregnancy, it was discovered that the semi-blockage had become a permanent block. The amniotic fluid was disappearing – all of it was now going back up into his kidneys, increasing the swelling of the cortex of the kidneys and the ureters, stretching and distorting the shape of them.

In short, Jack was in trouble, so I was induced the following morning and Jack was born 12 hours later. I held him for only a couple of minutes before he was taken to the neo-natal intensive care unit (NICU).

It was shortly after that we found out how severely damaged his kidneys were. The initial blood work, combined with the results from the ultrasound painted a bleak picture:  there had been so much pressure in the cortex of the kidneys, that the nephrons were significantly, irreversibly damaged. He was at Stage 3 kidney failure.

On top of that, we were also told his bladder had been working so hard trying to get rid of the pee, that it had become hard and muscular, instead of being soft and pliable as it should be. Blood was found in his stomach, and the NICU doctor advised us he thought Jack didn’t have any abdominal muscles.

I won’t delve into the shock I felt being in the NICU with Jack for the first time, seeing this tiny 5lb baby in a clear hard plastic bassinet, with leads attached to his body to monitor his heart rate, his oxygen saturation, his body temperature, his breathing; a catheter inserted through his penis to help him pee, a feeding tube in his nose. He was sleeping, looking peaceful. But I was so numb, I could not pick him up, or hold him, all I could do was stare down at him.

Those first few days after he was born, Jack had so many tests done that I cannot recall them all, other than blood work was repeated multiple times per day. The main issue was that he was not peeing properly, the results from the blood work showed his kidney function was worsening and so the decision was made he needed a vesicostomy.

A vesicostomy is cutting a hole about 1.5cm across in both his bladder and abdomen, then sewing the bladder to his abdomen, thereby exposing his bladder from the inside of his body to the outside, allowing the urine to drain directly from this hole. The purpose of this was two-fold: by allowing the urine to drain directly from his bladder, the hope was that his kidneys would start draining faster and also, because his bladder had been damaged, the vesicostomy meant the bladder didn’t have to work at all and could begin to soften again.

This surgery took place when he was 5 days old. And it didn’t make the difference we all thought and hoped it would. For 4 weeks we watched his creatinine (an indicator of kidney function) climb higher every day, his potassium levels so dangerously high that he was literally taken from my arms in order to have a central line put in. When he was two weeks old his creatinine was over the 600 mark (normal range was 49) and the doctors had 5 different treatments being done simultaneously to try to bring that number down, because if they didn’t, it meant he would need dialysis.

This was Jack’s beginning in this world, in this life. This was my introduction to motherhood.