By Paulette, mother to Annalise from China with anal rectal malformation
From the day I decided to adopt from China I knew that my role in this adoption was bigger then just sitting on the NSN list and waiting for the perfect healthy baby to arrive. God had equipped me to have the knowledge and heart to work with children of all types of disabilities and medical conditions. God had also shown me how to work the medical system and get the care I needed to save my life through artificial disc replacement. God was setting the grown work for me to open my heart and take in a child that he had designed specially for me to love and care for as her Mama.
On May 12, 2008 Zhao Jing Chu arrived. She was 21 months old and living in the South of China in a City called Shenzhen. Zhao Jing Chu was born with a congenital condition known as Imperforate Anus or also called anal rectal malformation. China called it Anal Atresia which made it difficult to research in the 48 hours I was under to make the biggest decision of my life. (Sure wish this site had existed then). I consulted with family and friends, adoption doctors and local pediatricians but most of all I consulted with God to make sure that Zhao Jing Chu was definitely my little girl, the child God wanted me to save and love forever. I believe God never gives you more than you can handle and as a single mom I put my faith in him to help guide me through this enormous decision. God called me to service and I accepted with a sense of urgency that would get me to my daughter in 2 months time. (LID 6/28/06) On July 18, 2008, six days before her 2nd birthday, Annalise Jingchu was placed in my arms forever. She was as beautiful, outgoing and sweet as her reports stated and very, very smart: she knew exactly what was going on. Which didn’t make it any easier for either of us. With a lollipop in hand I took her diaper off for the first time at the White Swan Hotel, and I knew from that moment we were in for quite a medical journey. Her anus was not placed in the proper place, surrounded by the muscles needed for continence. China had also left in her original fistula. (I call it the orphan special). They saved her life and got her out of the country. I thank God and China for that. All reports and updates had stated she was pooping and peeing normally. I would soon find out that was not the case at all.
Annalise and I fell madly in love and the bonding has been a dream. I could tell she had always wanted a Mama and she got her wish. Almost 3 months to the day Annalise after came home we made our way from Nevada to Ohio to have her original surgery redone by Doctor Marc Levitt at the Colorectal Center of Cincinnati Children’s Hospital. The surgery was much less invasive than they had originally planned and she was given a good prognosis for continence in the future and the ability to have children someday. She did have one strike against her and that was this was a redo surgery. Once again I put my faith in God to heal her and after 7 days NPO (no food and water) we were released from the hospital only to be called back a week later for additional urology testing. I was aware that Annalise had a very large bladder but I had no idea what was in store for her. She had been voiding on her own and never showed a sight of a urinary tract infection. In addition her MRI was clean: no tethered spinal cord and no spinal malformations. After the testing was complete Annalise was diagnosed with a Neurogenic Bladder and put on intermittent catheterization 4X/day. I was told this would be for the rest of her life. How could this be, did China hit something during the original surgery. This is quite possible. I am sure you can imagine how scared and devastated I was so many miles away from home all alone. In addition to the catheterization I had to start anal dilations to keep her new anus open and from additional surgeries in the future. With Pedia-Lax to help her poop we were up to 8 medial procedures a day.
I questioned this diagnosis because she has a clean MRI, no kidney damage, no reflux into her kidneys and she was voiding on her own. Remember God equipped me to work with the medical system and I knew to never take one opinion as your only option. After much prayer God opened the door to a new doctor and a new direction for us. We met with Doctor Hsi Wang Wu, a pediatric urologist at Lucile Packard Children’s Hospital at Stanford Medical Center in Palo Alto California. He understood everything she was going through from the adoption to the surgery. He questioned the testing from Cincinnati due to the fact it happened so close to her surgery and she cried all the way through it. He reviewed all the reports, tests and my catheterization diaries where I tracked every drop that came out of her for 2 months. He felt that at this time that intermittent catheterization was not the best medical treatment for Annalise. It had become quite a struggle to perform on her. She was fighting me with every ounce of strength she had. With his guidance we are monitoring her kidneys through ultrasound every 2-3 months and will redo the test that determined all this in April 2009. By no means are we out of the woods and I know this could be just the time we need to get though the dilations. They have an end in sight sometime this summer.
Even if Annalise has to use CIC (clean intermittent catheterization) for the rest of her life this is a condition that is very manageable and she is so smart and resilient that she will be able to care for herself when the time comes. No one knows she has a medical condition and she is as normal and healthy as any child I know. On top of it all she is such a wonderful little girl with an incredible spirit for life. She is definitely the little girl sent to me to me by God. I love her more than life itself. Without medical interventions Annalise may not have lived a full life in China and could possibly have gone into kidney failure. When you put your faith in God he always come through. He never says life is going to be easy but with my faith in him I know we can get though anything as long as we have each other.
If you would like to contact us please feel free to stop by our blog Love You Forever and drop me an email anytime.
Paulette and Annalise