Bladder Exstrophy: Calming Your Fears

April 15, 2019 adopting a boy, bladder exstrophy, Family Stories, older child adoption, Urogenital System, WACAP 4 Comments

In late fall of 2016, my husband I decided to pursue adoption. We mulled over what ages we would consider since we had other children and were “older parents” in our 40s. We decided that the perfect age would be somewhere around 4 years old. (I have now learned that when it comes to matters of the heart, it is best to keep an open mind.)

I spotted a little boy’s face on a waiting child photo list that immediately caught my attention. He was adorable and healthy looking. After staring into his face for a long time, I scrolled past the information about his development and zeroed in on his special need. “Bladder exstrophy” was listed. What was that I wondered? I scrolled back up and read the information listed about him. He had already had surgery for his bladder exstrophy. His birth defect was something I had no experience with and was not one that we had initially checked into for our medical checklist. I started Googling it. It didn’t sound that scary to me, plus he had already had corrective surgery.

My husband and I talked about it. He reminded me of the ages we were considering. This boy was 7 years old now – his picture wasn’t recent. I kept coming back to him though. A voice in my head would always say, “He’s special. He doesn’t belong there.” Which to me meant that he belonged here, in our family.

I told my husband I wanted to look at his file. He agreed. I requested it and we poured over the details along with medical photos. None of it scared me. The nannies had said such kind things about him. He was a gentle boy, a helpful child. He was smart. His file said his special need did not impact his daily life.

We had his file reviewed by the Adoption Medicine Clinic at the University of MN. They agreed that he was an otherwise healthy child and informed us that he would likely need multiple surgeries. They explained that bladder exstrophy is a chronic condition requiring regular follow ups and most likely more surgery in the future. We considered this but decided that we could handle it. He would probably not get the care he really needs as an orphan in China. That turned out to be very accurate.

One of the things I held fast to was that this condition usually happens randomly. The children affected by it are normal in every other way. There is no link between intelligence and BE. They are just normal kids who happen to be born with this condition.

Let me explain a little bit about bladder exstrophy first. As written on chop.edu, “Bladder exstrophy is a complex, rare disorder that occurs early on while a fetus is developing in the womb. As the bladder is developing the abdominal wall does not fully form, leaving the pubic bones separated and the bladder exposed to the outside skin surface through an opening in the lower abdominal wall.”

Each case of bladder exstrophy is different. Sometimes the bowel is also affected, sometimes the genitalia, and other organs may also be affected to varying degrees. For most children the treatment comes in phases. There is the initial closure which involves putting the bladder back inside of the body and bringing the pelvic bones back into place.

Another surgery sometime after the first may correct epispadias. Epispadias is when the opening of the urethra (the tube allowing urine to exit the body from the bladder) appears on either the side or the top of the penis rather than the normal position and is very common for bladder exstrophy patients.

And finally, when the patient and family are ready, another surgery to achieve continence (being able to hold urine) is performed.

For our son, his bladder exstrophy was not treated until he was 4 years old. He lived with his bladder outside of his body for that time. After entering the orphanage, they took him to Beijing to have his closure surgery performed. During this surgery they also did an osteotomy which brought his pelvic bones back into the proper position and performed the epispadias surgery and a hernia repair as well. After he was released back to the orphanage he never returned to Beijing and was given care as best they could locally.

For our son, that meant that he was still incontinent of urine. This turned out to be a blessing though because it meant that there was less of a chance of him having kidney damage from urine backing up, if it was not able to properly drain. The surgery also meant that he was more confident and felt less ashamed of his condition since the surgery gave him a more normal appearance down below. There is a big stigma for kids in China being or appearing different in any way and many kids face ridicule or feel ashamed of their conditions.

For us, his information told us that he would definitely need another surgery in the future. I researched hospitals that specialized in care for bladder exstrophy and consulted with the University of MN regarding our next steps when he came home. I was able to be in touch with advocates who had met our son in China, and they were able to give us useful information on what to expect as well.

During our wait for travel, our son turned 8 years old. When we finally went to China to complete our adoption, we didn’t bring anything special with us other than clothing for him. (You can find anything you need in China – toys, clothes, shoes, and medications.) The day we met him, he came to us with a pack of diapers and a small backpack of gifts from his nannies. He was so small and seemed undernourished but with bright eyes and a gentle disposition. He walked with a limp, so we wondered about how successful his pelvic surgery had been.



Adopting an older child was new for us but it went better than we had prepared ourselves for. We stopped and bought more of the same diapers he was used to at a Walmart there. He took care of things himself and needed no help. He just used the bathroom like everyone else but had to take a change of diaper in with him. I helped him shower just by getting the water turned on and handing him soap, shampoo and the towel. We figured out that he must have had a fistula (an opening between his bladder and outside of his body) because the urine was not coming out of his penis, but around it and his tissue around it was very inflamed. We had planned to take him to the doctor soon after getting home.

For the duration of the trip, he was great but tired easily and occasionally he would stop and sort of curl up, rocking. He always denied pain, but I had my suspicions about something hurting him. We made it home and the next day he spiked a fever. We brought him to the University of MN’s Children’s hospital where we discovered that he had a very large stone in his bladder, along with wire that had come loose from his closure surgery in China. After much research and because of the complications that could arise from removing the stone and dealing with the loose wire in him, we decided it was best to bring him to a surgeon with experience in this same complication.

We treated him for the infection and kept him on an antibiotic while we waited for our surgery day. We flew out to Baltimore to have the surgery at Johns Hopkins where we learned that often the repairs done in China to pull the pelvic bones in place involved the use of wire to anchor the bones together. In the US they don’t use wire. The problem comes when the children grow and the wire either breaks or is pulled off the bones. Our son’s wire migrated into his bladder on one side and irritated the other side enough to cause a fistula through which the urine seeped out and found a new way out of his body. The foreign object in the bladder caused a stone to form around it. By the time we adopted him and he had his surgery, it was the size of a man’s fist. He had lived in pain probably for at least 2 years with the stone building and harboring infection there. He had been treated for the infections in China, but they would just come back, and the pain never went away.

After his surgery and recovery, he was like a new boy. The time we spent in the hospital was excellent for bonding with him and his language exploded. He no longer limped, and his tissues returned to a normal appearance after having been swollen and inflamed for so long. Eventually he realized he could do things like jump off the bed, run up a slide and run full speed with no pain. There is no stopping him now! He’s a completely normal child. He’s so smart and kind. He’s very popular with his classmates and is always being invited to birthday parties. I often forget that he has any kind of special need at all. I have started keeping a few diapers in the trunk of my car for the times we all forget that we must bring them along.



We have discussed the continence surgery with our child, and we see our doctor out in Baltimore annually. His doctor does testing to see how his bladder is growing and to check on everything. Currently, our son isn’t ready to have the surgery and we are respecting his feelings about it. He thinks he will want to go forward with it in about a year or so. There are some people with BE that choose not to do it at all and there are some children who have it done at a much younger age out of necessity. For our boy, his file was right – BE does not impact his daily life. He goes swimming with everyone else, he is doing fantastic in school, he loves fishing and playing X-box with his brother. I was concerned about school and how to handle that, but he uses a private bathroom in the nurse’s office and there are no issues with it. He got his first pet recently, a guinea pig that he named Sweet Pea and he is kind and gentle with her.

My husband and I are considering adopting again and we are open to bladder exstrophy again as well. There may be unknowns for our boy with his future, but there are many certainties as well. He is certainly going to be able to father children, and he certainly has a whole lot to offer this world and everyone who gets to know him. Just as Psalm 139:14 says, he is fearfully and wonderfully made.

You will find a great community of parents and people with bladder exstrophy that you can connect to online and in real life. I am going to include links that I found useful during our research, and now as a parent of a child with bladder exstrophy as well.



Resources:

Association for the Bladder Exstrophy Community
FB Group Bladder Exstrophy Community
FB Group Special Needs Resources
The University of Minnesota’s Adoption Medicine Clinic
FB Group for Parents of Kids with BE
FB Group for People with BE
Excellent Video for Kids with BE

– guest post by Lina



4 responses to “Bladder Exstrophy: Calming Your Fears”

  1. Rachel says:

    What an amazing son. My heart broke as I read about the wire and the stone but I’m so grateful they were able to fix everything at JH. Thank you for sharing your story ❤️

  2. Julie says:

    Thank you for sharing your son’s story. My, I feel for him enduring that pain!
    So glad you said yes to him. This encourages me.

  3. Stephanie weeden-wright says:

    Thank you for sharing! My husband and I brought our daughter (2 yr) home from China 6mo ago. She has BE and we were so afraid at first. I came here looking for some answers but no one had posted about this condition. Ultimately love overcame our fear and we cannot be more grateful for that. Our daughter is truly amazing and I hope that others looking to adopt a kiddo with BE finds some peace in reading this. Blessings and thank you!

  4. Beth Drafts says:

    So thankful for you and your story. We know two families with children who were born with BE. Precious babies who need love and medical care – once those two are in place, these children thrive and move mountains!

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