Family Stories


At No Hands But Ours, we love family stories. Since our inception in 2008, we’ve featured a wide variety of family stories – and we continue to add new stories regularly. Please use the links in the right sidebar to click through to stories on specific special needs, or you can scroll down this main page to read all our family stories.

If you are home with your child from China, and would like to have your family story featured here, just use this form to let us know.


 


Bladder Exstrophy: Calming Your Fears

April 15, 2019 by nohandsbutours 2 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

Life Is Better With You

April 3, 2019 by nohandsbutours 1 Comments

We were on our way home from the dentist when my phone buzzed.

Seeing the familiar number of our agency, I pulled over and answered. “Hello!”, she said cheerfully, “We are calling because we have a file we’d like to share with you if you’re interested.” She went on to say that it was a boy and he had a diagnosis of hydrocephalus and brain damage.

When we filled out the medical checklist, we wanted to be open to many diagnoses, but we also needed to be realistic on what we felt we could handle. We have a large family, live in a rural area, and we home school, so saying “yes” to a child would mean we felt capable of providing the care that they needed.

When I hung up the phone, I quickly got back on the road. I couldn’t wait to get home and review the file with my husband.

A year earlier, we were near the end of a difficult pregnancy that ultimately led to our son being stillborn at 39 weeks. It was a devastating time, but through his life and death, God was preparing our hearts for another child. About six months after we buried our precious son, we decided to pursue our second adoption, this time intentionally being open to more significant special needs.

We knew that “brain damage” could mean so many different things, and a child with that label could have a wide range of capabilities. When we opened his file, we found a wealth of medical information, including his brain scans, detailed medical reports, as well as photos and videos. We shared these with an online friend, an adoptive parent who is also a radiologist.

We learned that this baby had suffered a grade IV brain bleed and he had permanent damage to some brain tissue. The outcome of such an injury could vary widely – he could be completely normal, he could have some minor disabilities, or he could be severely delayed.

Initially, we told our agency that we didn’t feel comfortable because it seemed overwhelming. But even with the brain scans that showed obvious differences and a language delay, we couldn’t get his sweet face off of our minds. We continually prayed for his family to find him.

About two weeks after we saw his file for the first time, we saw his face on the Waiting Children page. We called and asked to hold his file again and promptly sent his information to an international adoption doctor for review.

The specialist helped us gain a better understanding of his medical history. She was so thorough, taking all of the information and putting it together, even picking apart his movements in the videos. His injury, probably caused by a stroke in utero or shortly after birth, could have a wide range of outcomes. We asked for best-case and worst-case scenarios, and she gave us her honest opinion.

Full of new knowledge, we spent the rest of our evening talking and praying together. From the beginning of this adoption journey, we felt God calling us to “get out of the boat” and trust him.

We knew that he was trustworthy, but taking that step felt scary.

In the days that followed, the feeling that we should pursue this little boy grew stronger. We had peace about caring for him no matter what his future held, so we joyfully submitted our letter of intent.

Several months later, we were on board a Delta Airbus, headed to our son’s home country. Were we nervous? Absolutely. But superseding all the feelings of apprehension was knowing that he was our son. We could not wait to meet him and shower him with the love of a family.

Meeting Cai for the first time was surreal. He was precious, amazing… and he was ours.

He had a really difficult time adjusting, and we were unsure if his behavior was due to grief or his brain injury. Those first weeks in China drained us, but we really tried to take things moment by moment. Over time, it became obvious that Cai was grieving, and we began to see glimpses of his true self: he was comical, energetic, and obstinate. He was also very bright: despite his language delay, Cai was using some sign language to express his wants and needs while we were still in China.

It’s been a year since our sweet boy has been home. We’ve seen specialists, have had therapists at our home, and have watched him blossom right before our eyes. We learned from a neurologist that his injury was significant, but his brain has compensated and he has an excellent chance of living a normal, independent life.



The hydrocephalus diagnosis was ruled out, and he only needs bi-annual visits to track his progress. We’ve had many therapists visit, so many that when our social worker came for his one-year post-adoption visit, Cai assumed he was here for therapy and asked, “Do you have any puzzles?” His receptive and expressive language has grown so much that he does not need speech therapy any longer.

When we said yes to our son, within our letter of intent we wrote, “We will help him achieve his greatest potential, whatever that may be.” He’s doing so much better than we ever expected, and we are amazed by him every day. His great sense of humor, his boundless energy, and his zeal for life have brought us so much laughter and joy. He is smart, creative, tenacious, and has a smile that melts everyone’s heart.

Saying yes to another child, especially one with an unknown future was hard, but our lives are so much better with him here.

– guest post by Lindsay

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