This story was told to me by Julie via FaceTime.

Two months before the birth of Julie’s seventh grandchild, her daughter-in-law went to the hospital for routine tests. The doctors discovered that there was a unusual lack of amniotic fluid in the womb. At first, they hesitated to raise alarms–there might have been a half dozen explanations for such a thing–but the fluid levels continued to drop, and so in December of 2012, Julie’s daughter-in-law was sent to Sheffield Children’s Hospital for an ultrasound. There, she received disturbing news: her developing showed no signs of kidney function.

The hospital offered Julie’s daughter-in-law a pregnancy termination. Desperate for another solution, she¬†asked all the right questions and did all the right research. She learned that during the third trimester, the amniotic fluid is produced by the baby, not by the mother, and there was still some fluid–not a lot, but some–showing on the scans. It was a small hope, but a hope nonetheless. Still, the nephrologist said there was no way to tell whether or not the baby would have any kidney function at all upon birth.

Six weeks ahead of schedule, Jack came into this world via induced cesarean section. Even premature, he weighed eight pounds–a good sign. But on the second day, they discovered that Jack’s ureters were obstructed. The urine his kidneys had produced while in utero had backed up, destroying one of the organs and rendering the other almost entirely useless–only 4% function. The doctors said his condition “wasn’t compatible with life.”

The statement didn’t sit well with anyone, Julie least of all. She wanted to know if anyone else had suffered the same condition as Jack and survived. She asked the head nurse if she’d known of any survival stories, which she had. However, she said, they are very rare, and it wouldn’t be an easy ride. Complications usually begin to pile up quickly.

But so far, in his few days of life, Jack had acted normal. The tests showed trauma, but the baby showed life. “Jack is my seventh grandchild,” said Julie, “but this was the first time any of us had to go through anything like this. You’d do anything for your grandchildren, even when the odds seems to be against you.”

That’s when, while sitting with Jack in the hospital one day, Julie overheard a doctor say, “This kidney seems to be holding it’s own.”

“I know it doesn’t sound logical,” said Julie, “but at that moment, I knew Jack was going to be okay.”

The short term goal was to either get Jack through his first two years of life, or get him to two stone (twenty-eight pounds), so he’d be eligible for a transplant. Neither would be easy.

“Renal babies have to be tube-fed from birth, so it was going to be really challenging to achieve either goal. It’s one of those times when you’re grateful to have a really big family and we’re all really close to each other.”

Jack eventually moved to a children’s specialist renal unit in Nottingham. They expected him to spend most of the next two years there, but he began to thrive. Feeding remained a challenge–he constantly vomited up the special formula they gave him–but despite the challenge, his kidney function actually increased to 18%.

“He was taking proper wees,” said Julie. “He was a good shot, too. He could certainly get you in the eye when you were changing him!”

For the next two years, they did the best they could to have Jack lead a normal life. Then one day last summer, things took a turn. Jack’s remaining kidney suddenly shut down. He started dialysis immediately, and they began investigating their options for kidney transplantation.

“I told my family I was going to be the donor, and they laughed at me,” said Julie. “But I knew it was going to be me. I just knew. I’d been saving money since his birth so I could take the time from work.”

Julie’s premonition quickly became a reality. Not only did they find that she was a compatible donor, but she was nearly a perfect match for Jack. Not only that, but it turned out that one of her kidneys was smaller than the other–perfect for transplantation into a toddler.

“Jack tends to learn things from me, which isn’t necessarily the best thing. I’m the original bad grandmother. We’re already joking about him doing all sorts of things adults shouldn’t be doing once he actually has a literal part of me living inside of him.”

Julie has her appointment with the Human Tissue Authority on Friday, March 18, 2016. After that, they will only have to wait for a surgery date to be scheduled, which could be anywhere from three weeks to six months out.

“People ask me if I’m scared. I’m not. I just want it to be done.”

Thanks to the National Health System in the UK, Julie will be compensated a fair amount for any time that she misses from work or expenses she incurs as a part of this donation. Combined with her savings, she’ll have more than enough to bear whatever financial burden might accompany the procedure.

“It’s nice to not have to worry about it, but the money isn’t the important part, anyway. What’s impressed me is how this has really brought out the best in everyone. Jack’s older brothers both volunteered to donate, even though they’re not old enough yet. I told them¬†they’ll still have a chance since Jack will likely need at least two more transplants in his lifetime.”

As for Jack, he’s still acting like a normal two-year-old. “We had to put him on the naughty step for battering his sister!” said Julie. And, for better or worse, she expects she’ll see a fair bit more of that once Jack has a functioning kidney.

“More than anything, I can’t wait to see him eat his first meal. That alone will be worth everything.”

Julie’s story is the sort that donors and recipients like to hear, and with good reason. There is so much hope and encouragement in watching all the cards fall into place for Jack and his family. In particular, I’m moved by the persistence and determination shown by his family. If Jack had been born to someone else, there’s a chance he wouldn’t be here right now. Many people–understandably–would have chosen to terminate the pregnancy. Neither decision is an easy one, and they both have lifelong consequences. But to me, there is beauty in taking such risks in order to give someone else a chance at life. In a few weeks, Jack will have that chance, and that is the outcome that every donor and recipient hopes to see.

Check back in the next few weeks for an update following the procedure.


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