One Day at a Time: Adopting a Child with Posterior Urethral Valves

December 14, 2016 hydronephrosis, incontinence, November 2016 Feature - Urogenital, posterior urethral valves, undescended testicle, Urogenital System 2 Comments

Four years ago, when my husband and I started praying about adoption, there were so many decisions to be made.

After some time God made His ways clear. A clear path to China! We started to interview agencies and that is when God revealed our son.

We were pretty familiar with the children on the photo listings. We researched medical needs and tried to seek God’s will. It was during our phone interview with an agency that we saw our son.

How had we not seen his face before?
What was his medical need?

Truthfully, it did not matter to us. We were sure he was ours. There were so many beautiful things that God orchestrated to confirm that he was our son.

We had his file reviewed by our pediatrician for good measure. There did not seem to be anything too concerning. He had corrective surgery and his condition seemed stable. We had few worries.

Fast forward ten months later….

We met our son in China. The first day we noticed something missing. We did not want to violate his personal space, but we were sure that he had an undescended testicle. This was not part of his medical report. It was surprising to us that it was never noted since his special need was/is urogenital. He was born with posterior urethral valves. He has hydronephrosis in both of his kidneys as a result of his birth defect.

When we returned home, we brought our son to our pediatrician and received a referral to urology. It was at that urology appointment we heard concerns we had never heard before:
– bladder damage
– bladder control
– surgery
– kidney damage
– kidney transplant

What?!

The possibility of a kidney transplant was news to us.

The initial assessment included ultrasounds and labs. It was followed by surgery to assess the bladder and take care of the undescended testicle. The surgery was simple and short. The recovery was minimal. We were told that it was necessary to have the testicle brought down to decrease the risk of testicular cancer.

Posterior urethral valves are a birth defect only found in boys. There is a membrane that obstructs the urethra causing urinary retention, increased pressure in the bladder and kidneys, frequent urinary tract infections, and other health problems. This condition can many times be detected during pregnancy. We were told “valve boys” can fall into three categories.

1. do not survive birth due to the kidney damage during pregnancy
2. born very sick – most will require a kidney transplant at a young age
3. will not require a transplant until at least young adulthood

Thankfully, the doctors believe that our son falls into the third category. Despite his kidney and bladder damage, he is currently stable. He had surgeries in China that cut away the obstructing flaps in the urethra as well as reimplantation of his ureters. These surgeries saved his life. God’s hand of protection and healing hands held him before he joined our family. God is so good!



Day to day care of a child with posterior urethral valves and hydronephrosis can vary greatly. Our son’s care is pretty minimal compared to some children with these conditions. At eight years old, he is not potty trained. Although he may be self-cathing in the future, he currently wears pull-ups. This has been a bit tricky in the school setting, but we have a system at the school to store pull-ups and maintain his privacy.

We visit urology and nephrology every 4-6 months along with having labs and a renal ultrasound. A strict toileting regimen and good hydration are the most important things daily for him. He does not have any activity restrictions. Which is a good thing, because he is an active boy!

We do not know how long his kidneys will last, but God does! We take one day at a time. His medical needs are nothing compared to the great need of his attachment issues.

We trust that God will not only heal his kidneys, but also heal his broken heart.



Resources:
Facebook PUV Group

– guest post by an anonymous mama



2 responses to “One Day at a Time: Adopting a Child with Posterior Urethral Valves”

  1. Amy Rankin says:

    Love your article…thanks for sharing! Where is this beautiful canyon in your photo?

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