Living with Pediatric Urology Issues

Alanis is truly a miracle child to me. I already had 3 kids, all healthy, when I found out I was pregnant with alanis. I had my first ultrasound at 9 weeks. I knew something was wrong when the doctor called me back to his office. He said that something was wrong with her bladder but they weren’t sure what. It was taking up a large portion of her stomach cavity. I was referred to a clinic in Birmingham, AL. I went every 2 weeks for ultrasounds and was told so many different things. They thought I wouldn’t carry her past 4 months because her bladder was so big they didnt’ think it was draining and therefore I wouldn’t have the amniotic fluid to sustain a pregnancy. Another doc, who will remain nameless, suggested I abort her because she would either only live about an hour after birth (if we made it that far) or if she lived she would be a medical and financial burden. Yes, he told me that. I was told all her insides were garbled together and she likely wouldn’t live but they just didn’t know for certain. Something was wrong with the umbilical cord also that was usually indicative of some sort of heart abnormality, so we were sent to heart docs who done ultrasounds of her heart in utero. All was fine in that area.

Anyways, I did carry her to term. she was sooo tiny for a full-term baby. But she was in the NICU and I couldn’t hold her or take her home. That was the hardest thing I’ve ever had to endure. Her genitals were malformed. She didn’t have male/female parts but there were enough abnormalities going on that they couldn’t figure out how to catheterize her. She stayed in the hospital 11 days and got to come home. I had to catheterize her every 6 hours. At 3 weeks old she got her first UTI and was rushed back to B’ham and was in the hospital again. Since then she’s had numerous infections. At age 5 months she was hospitalized and had surgery for intasuseption(?) Her bowels were telescoping back into one another and she was on the brink of dying. Surgery fixed that though and afterwards she started urinating on her own. But she still got infections. her bladder wouldn’t fill up however. She was constantly wet from leaking urine.

Finally at age 5, her urologist performed surgery to find out exactly what was wrong with her. they found out that her bladder and vagina were fused together and she didn’t have a bladder neck or sphincter muscle to control her bladder. Her bladder was also very large and floppy. She had reflux and one kidney was smaller than the other. The list of diagnoses and names is long and I don’t remember all of them. But the urologist made her a urethra from some extra bladder tissue and closed off her bladder from below. She no longer urinates from her bottom. Instead, she has a stoma in her lower belly on the side where we cath her so she can use the bathroom.

It was scary at first but she is proud because she can wear big girl panties now and not diapers. She doesn’t mind the cathing. It doesn’t hurt her. We just kinda have to revolve alot of things we do around what she can and can’t do. They all love to swim but she gets UTI’s when we go so we can’t do that. She kept infections all the time anyways before the surgery because her urethra was always open so she keeps the same amount of infections. She takes a daily antibiotic for prophylaxis.

This just scares me because she is getting resistant to alot of antibiotics and she is allergic to one or two also. I didn’t realize that so many children had bladder problems until I had Alanis. I will keep all of you and your children in my prayers. Alanis always like to know that there are other kids out there that have to catheterize like her. she won’t tell just anyone that she caths either.