I have to be completely honest from the start. We did not choose this special need. We had never even heard of it! And if we had known what it might entail, I can tell you plainly, we would have chickened out. But God knew that and kept us in the dark so He could give us the extraordinary gift of light, our precious daughter.
Let me set the stage regarding our family. We had five beautiful children the old fashioned way (as my stretch marks will prove). I had to have a hysterectomy and was heart-broken, but my husband assured me we could talk about adoption eventually. One Sunday a multiracial family visited our church and we talked to them to see how they had done it. They suggested we check out the website of a ministry that advocates for hard to place international children. I said firmly, “I cannot afford international and I cannot handle special needs!” They ignored me, gave me the email address, and within 4 days we were in process for a Chinese toddler with complete bilateral level III cleft lip and palate.
What her file did not state was that she was profoundly deaf in one ear and had a brain tumor. We also naively thought that one surgery would do the trick. We are now 11 surgeries in with at least 2 more to go. Yet we were glad that God did not let us miss this huge blessing because of fear….so we went back to China 2 years later for another cleft affected daughter.
Time passed and China’s rules stiffened. We no longer qualified to adopt, but I never stopped looking at the beautiful faces on adoption sites. We began to hear rumors that the rules were loosening up so I began my search in earnest. One day I saw this adorable little girl on the Holt waiting child page. Her file said, “Repaired Imperforate Anus with Ambiguous Genitalia.” We saw pictures of the anatomy that were clearly female and had the genetic test results as well. We sent her file to a local pediatric urologist who said she would need one surgery and to not let anything in that file scare us away. Sounded easy to us………and who could have resisted this face???
Fifteen months later my 14 year old daughter and I walked into the Provincial office in Changsha and met a firecracker 3 year old who wanted nothing to do with us! Everything looked normal except for a couple of scars! She told us when she needed to potty for pee pee. We were not too concerned that she was constipated some days and had runny stool others. We were giving her a wide variety of food she had never had before so that seemed normal to us.
She fit into our family as soon as she walked into the house. Feisty, brilliant, and so happy! Our hearts were SO FULL of love and gratitude to God for this child and her “easy” special need!
Our pediatrician ordered a set of X-rays and told us he the report said, “Spinal Dysraphism,” but he did not know if that meant anything. A female endocrinologist examined her and thought we might want to watch what happened to a thin membrane near the vaginal opening. We were still feeling giddy!
All of that changed when we took her to the same urologist we had review her file. Before he even touched her he said, “So, she’s a one-holer.” A what? He repeats the question and adds, “And incontinent, right?” I was insulted, confused, and offended. He examined her, put a numbing cream on her private parts, and left the room. When he returned he sliced a thin membrane that had covered her vaginal opening. And there it was…….one large opening. He “helpfully” drew a picture of her insides on the table cover, told me she probably had spina bifida, first used the words “complex cloaca,” and that he would do a sedated scoping and MRI in one week. Once he confirmed the severity of the problem he would operate in about a month.
What was he telling me? What is the simple explanation of complex or ‘persistent’ cloaca?
The rectum, vagina, and urethra are fused into a single common channel, hence the local urologists crass term, “One-Holer.” When the three separate channels are high up in the common channel, the term is considered complex. It presents one of the most formidable challenges in pediatric surgery. The purpose of surgeries include: anatomic reconstruction, achieving bowel and urinary control, and normal sexual function. Cloacal anomalies occur in 1 per 20,000 live births. They occur exclusively in girls and comprise the most complex defect in the spectrum of anorectal malformations. Read this for an extensive discussion of cloaca, indications, surgical options, etc. Spina bifida and dysraphisim often accompany the diagnosis.
I do not even remember leaving his office or driving to pick up my teenager. I was stunned. Pale. Unbelieving. It was horrible and it was all my fault. My husband is always a glass half full type and he believed the surgeon would not lead us astray. Why in the world would any surgeon do that? But he did. He used the only method he believed in because he was trained in it, and he repeatedly told us that “other” programs would put us through many procedures but we would end up with the exact same result.
Without belaboring the point, my first piece of advice for any adoptive parent who receives a stunning report like this, investigate, investigate, INVESTIGATE! Your local doctor may be perfectly capable for some things, but check out sites like this one, google until your fingers ache, find a yahoo group. Do not settle for the local option quickly! We SO regret letting this man operate on our daughter.
It took us a while to recover after making that mistake and seeing our child reap the consequences. Little by little we would find information that would lead us to the next step and the next, until we found Cincinnati Children’s. Then, as I googled everything I could about cloaca, I kept seeing the same names…..Dr. Alberto Pena and Dr. Mark Levitt, both from Cincinnati Children’s with Dr. Pena as the inventor of the most cutting edge and successful reconstruction surgery. We fired the urologist AND the pediatrician, found one who was willing to get educated herself, and waited to be scheduled in Ohio.
I cannot say that I was pleased with the long process of evaluating your child, treating, re-evaluating 3 months later, scheduling surgery 3 months after that, etc. I just wanted my daughter fixed right this minute. One and done. Get me home to my other children. “Have I mentioned that I have 8 of them at this point, folks?” But I surely knew I was in the right place with the right people as I met more and more families from all over the world who had brought their children to this program. Now I am a disciple for their methods and time table. The methodology comes from experience mixed with caution, all the time hoping that the lesser intervention will work. And all the time our child was happy and healthy, so we learned to wait and trust the team that God had given us.
Our daughter’s treatment has consisted of:
1. A week of bowel management using a daily enema plus testing.
2. PSARVUP-reconstructive surgery.
3. Another week of bowel management, this time with a laxative trial.
4. Local ultrasounds and xrays plus a regime of medications to improve the health of her bladder.
5. The big one: an 11 hour surgery to augment her bladder, reimplant her ureters since she was refluxing urine into her kidneys, using her appendix to make a port in her side for urinary cathing, and a port in her belly button made from bowel for her daily colon flush.
6. A minor scar revision.
And all of this took about 2 years from start to finish.
Today she is 7 year old, caths herself! The daily 60 minute colon flush has become a time she bonds with her father. This is called “social continence” and we are VERY happy with the way it has improved her already high self esteem. She can go swimming, to the beach, to classes, to church….all without diapers or needing a parent with her. She is no longer refluxing urine into her kidneys and they are health. She is AMAZING, funny, curious, beautiful, brave, capable, loving, smart….everything we could have asked for in a daughter and MORE!
Did it turn our lives upside down, shake us, stretch us, make us BROKE.. and broken?…..Yes, it surely did. Was it hard to be so far from my family while in Cincinnati? Each stay after surgery was around 21 days. Yes! It was the one of the hardest periods in the life of our family. It has now been a year since her last stay and I still do not think my mind has adjusted to not having a surgery on the horizon anytime soon.
Would we do it again?………..well, we did in a way. We went back to China 18 months ago for a child whose file said repaired IA (Intestinal Atresia), spina bifida, and developmental delays. She does NOT have delays or spina bifida, and will not need any surgery for her IA. She is now potty trained and has just a little glycerin to insure a daily BM.
A wonderful and loving 4 year old, cute as a button, and a fair match for her sister since they are both “spicy” Hunan girls! But we knew we were taking the chance she had cloaca like her sister. We backed out twice from fear, but God kept telling us she was our daughter. He can be pretty persistent!
Would we do it all again? You better believe it.
~Guest post by Stephanie
Thanks so much for posting. We just adopted an 18 month old with Anal Atresia repaired in China. We’re going for our first stateside medical checks in a few weeks, and I’ll be keeping your post in mind. Thanks again. Beautiful family!
Thank you so much for this post! I have read it a few times now. My husband and I have applied to adopt a little girl who has persistent cloaca and esophageal malformations. The more I read the scarier it is! Reading your story has really helped when I start to feel panicky!