Theodore was born with renal failure. This is his story.
Teddy’s Brief History
Our Teddy was born via induced (but otherwise natural – go mama!) labor at 38 weeks gestation due to extremely low amniotic fluid. We knew he had severe hydronephrosis in one kidney, and there were conflicting reports about the other kidney: it was just fine, it was missing, it was small, it had no blood flow, it looked good, who knows. When he peed after birth, the attending pediatrician assumed things were fine and we didn’t push it.
At 6 days, we had a scheduled consult with a ped nephrologist and discovered that Teddy was in kidney failure, his right kidney was small and nonfunctional, and his left kidney was barely functioning, if at all. We were transferred to the UI Hospital in Iowa City via ambulance and stayed there for three weeks getting him stabilized.
Since then, he’s had a rough journey.
Here is a current diagnosis list
Vesicoureteric reflux (urine flows back from his bladder to his kidneys, VUR) (Teddy has stage 4 reflux on one side, and 5 on the other. That’s the worst it can be, and then one step down from the worst. His ureters are large and twisty, rather than narrow and straight. Technically, it’s called hydroureter.) Reflux nephropathy (kidneys damaged from the VUR) UPJ obstruction (the kidney that isn’t too small had an obstruction at its outlet, which was fixed with T’s first surgery when he was 8 days old.) Congenital renal dysplasia (one kidney is small and underdeveloped) Chronic Kidney Disease, Stage V (this is the big “what’s wrong.” Everything else is either what caused this or what is caused by this. This is also known as kidney failure) Premature Birth (36 weeks, induced for lack of fluid) Anemia of chronic kidney failure (his kidneys don’t make the hormone that tells your body to make red blood cells) Feeding by G-Tube (he is 100% tube fed) Low Gammaglobulin Level (we’re still uncertain what this means) IgA deficiency (though this is on his diagnosis list, I’m not sure if it’s true.) High Blood Pressure (kidneys regulate blood pressure, and T was diagnosed with hypertension when he was something like 6 months old) Hearing Loss (this has been resolved with the tubes) Vomiting (ha ha ha) All sorts of hyper- and hypo- things from his labs. (phosphate, calcium, etc)
Here are the surgeries he’s had
12/4/11 Left dismembered pyeloplasty with placement of percutaneous nephrostomy tube and circumcision.
12/7/11 Broviac placement; PD catheter placement 12/21/11 Broviac replacement (malpositioned) 2/2/12 G-tube placement, open procedure, Mic-key button 3/2 Broviac removal (infection) 3/7 Bard PowerPort placement 3/30 PowerPort replaced (malpositioned), PD Catheter replaced (malpositioned) 8/10 Tubes 9/14 PD Cath replaced 10/8 PD Cath revised, tacked down. Port removed. 11/5 PD Cath replaced. 11/14 PC Cath removed
12 surgeries before he turned 1.
11/26-11/29: birth (4) 3 days at home 12/2-12/23: NICU (22 days) 40 days at home 2/1-2/9: Gtube (9 days) 16 days at home 2/26-3/9: Broviac infection (13) 16 days at home 3/26-4/6: dehydration (12) 95 days at home 7/11-7/17: line infection (enterococcus) (7) 25 days at home 8/12-8/13: pre-surg, cancelled for cdiff (2) 22 days at home 9/5-9/18: line infection (enterococcus and ascintobacter), PD cath replacement (14) 13 days at home 10/2-10/13: line infection (ascintobacter), port removal, PD cath replacement (12) 19 days at home 11/3-11/15: dehydration, then catheter replacement, then fungal peritonitis (Candida Parapsilosis), then cath removal. (13) 69 days at home
He’s had three bouts with C-Diff, two IVIG infusions, some 3-4 iron infusions.
Last time I saw a number, his estimated GFR (a measure of kidney function) was 8 (that’s pretty low).
That’s it in a nutshell. Happy to answer questions.
Theodore Joseph Reid was born November 26, 2011. He was born early via an induced but otherwise natural labor due to low amniotic fluid, and it was discovered at 6 days old that he was in kidney failure. Teddy is holding his own for now, and is working on growing big enough to receive a kidney transplant. Please pray on behalf of this precious baby boy and his parents, brother and sister. Let’s shake the heavens with our hearts and voices. “Where 2 or more are gathered in my name, I will be among them”