January 22, 2009 anorectal malformation, Family Stories, imperforate anus, Lifeline 0 Comments

By Diane, mom to Tessa from China with imperforate anus

In October 2005, we were in the midst of our adoption paperwork for our daughter Tessa. We were with one agency, but I continued to check the special needs lists of other agencies. We knew that God had called us to a special needs adoption, but we were not sure what that meant.

On October 21, I received an email from a fellow adoptive mom. She saw a little girl on Lifeline Children’s Services site that she felt was perfect for our family. I quickly contacted the agency and asked if she had been matched with a family. The young man at Lifeline, Dustin, said that she was still available for adoption and began to explain her special need. “Kimmy” as she was named by the agency was born July 9, 2004 in Nanning, Guangxi. She was found on a train when she was 1 month old, and had a birth note from her mother. She had a condition know as Imperforate Anus. As Dustin was reading the information to me, I was busy pulling up WebMD. I had never heard of this condition and was completely baffled. “An imperforate anus is a defect that occurs during the fifth to seventh weeks of fetal development. With these defects, the anus (opening at the end of the large intestine through which stool passes) and the rectum (area of the large intestine just above the anus) do not develop properly.” (from Cincinnati Children’s Hospital Web Site) For this child it meant that she was born without a rectum and her stool was passing through a hole in vaginal area. By this point in time, my head was spinning. How could this child survive? What would her life be like? Dustin asked if I would like to review her file and see a picture. I said yes, but I was very skeptical. When the email arrived and I opened the picture, I knew I had just met my daughter. All of the medical stuff just didn’t matter at that time. This little girl was now Tessa Qian Harlow.

I knew we would have to research this condition more. I sent the files to our pediatrician for review. Her first comment was “she’s a keeper”. She explained that this condition was surgically repairable and that she could live a wonderful life. I also began to talk with surgeons who specialize in this field. The surgery to repair this condition is known as the Pull Through. This technique was developed by Dr. Alberto Pena. More about Dr. Pena later.

So, in March of 2006, we traveled to bring our baby home. She was everything that I could have dreamed of and more. We learned that her foster mother had worked hard to help Tessa maintain regular bowel movements. She gave her 7 tps of castor oil each day. Uggh!!! We had brought laxatives with us, so the castor oil was a thing of the past.

When we arrived home from China, our first visit was with a surgeon in St Louis. He completed Tessa’ first procedure, which was a colostomy bag. This would help to keep her bowels clean for the next procedure. In July they attempted her first pull through surgery. Unfortunately, it failed. Tessa’ condition was more severe than the surgeon had originally thought, and she would need another operation. Our surgeon contacted Dr. Alberto Pena at the Cincinnati Children’s Hospital. After Dr. Pena reviewed Tessa’ information, he cleared his surgical calendar and scheduled her procedure for the next week. The surgery was a success! We return for one last surgery with Dr.Pena a few weeks later, this was to close the colostomy and allow Tessa’ body to begin to work the way it should. We owe so much to Dr Pena – he is a wonderful man. Before each of Tessa’ surgeries, I asked that the surgical team pray with us. Dr Pena held my hands and prayed over Tessa.

Since the surgeries, we have worked to maintain Tessa’ bowel control. We have to be careful that she does not get constipated, and this is done through daily laxatives. We also watch her diet very closely. There are some foods that do not work well with her system. Other than that – she is doing great!!!

This condition does require some intense work on the part of the parents during the colostomy stage. Tessa had her colostomy for 8 months. You learn to always pack extra supplies and be prepared for the bag to come off at any time. There are also dilatations that have to be done following the pull through. This means inserting a dilatator into the newly created rectum to keep it open and to stretch the muscles. We learned to make this a special time with Tessa. I would read her a book and then hold her after the procedure.

I honestly believe that Tessa’ medical condition helped her to bond more with us. She learned that she had to depend on us to bring her comfort.

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