April 7, 2009 Family Stories, megacolon 0 Comments

by Shelley, mom to Annabelle from China with a SN of megacolon

We started paper-chasing for daughter #2 back in August 2006. Shortly before we started the paper chase again, we were already seeking treatments for Francesca’s bowel issues and learning so much. As the wait time from LID to referrals increased (we were finally LID with China in April 2007), we decided to take a look into the possibility of adopting a special needs/waiting child. After doing a ton of research, we submitted our MCC (medical conditions checklist) with our agency back in October 2007 for a special needs/waiting child referral (I now remember we marked off many of the conditions mentioned on that list). Months went by without a word from our agency and we continued to seek the best possible medical treatment for our daughter, Francesca, who was already at this point been diagnosed with a mega colon and who has already had several procedures completed in order to help her. In the middle of May 2008, Francesca had an appointment with her gastro-specialist. During her appointment, Francesca started talking about her baby sister and how she is currently living in China just waiting for us to come and take her home. Her specialist was really intrigued and started asking me questions on our second adoption. I then explained to her about the switch we made from China’s traditional program to the Waiting Child/ Special Needs program and that we were still waiting for a referral…and it was at that time when our Doc asked me if we marked off “mega colon” as one of our acceptable conditions and I told her NO, that “mega colon” wasn’t listed as a choice on our list and that I didn’t know if it was even possible for us to include that as an acceptable condition for us through our agency. Francesca’s specialist’s response was “That’s too bad because you guys really know what’s going on with mega colon and another child diagnosed with this condition would benefit so much from your knowledge, commitment, and love.” Now, she had me thinking….

When we arrived home after leaving the doctor’s office, I quickly pulled out our copy of the MCC that we submitted back in October 2007 to see if there was a spot on the form to include a mega colon and there was… on the form was a “write in” area where you can list other conditions that we not already listed. I quickly called Keith and asked if he would be on-board with adding a mega colon as one of our MCC choices. His response was exactly what I expected… he said, “Go for it!” I then updated our MCC and mailed it off to our agency in Colorado. A week later, I called our agency to see if they received our updated MCC which they didn’t so I than decided to fax it to them. Once I got the confirmation from the fax machine that it was sent, I called our agency back to confirm that they did get it. The representative from the WC department I got on the phone was a little short with me with regards to the new conditions I wrote in. Her exact words to me were, “We never get children with mega colon… let alone one that has been diagnosed with a mega colon at such a young age. So don’t expect a referral for one.” Her words did not discourage me at all, but they did come back to haunt her… for a month later, for on June 27th, I received a phone call from our WC department head with a referral for a little girl who at the time was 14 months and was living in Beijing at a care center where she was placed after having emergency surgery on her mega colon when she was just 2 months old. Words can not explain what I was feeling when I got that phone call. Only one month before, we decided to add the words “mega colon” to our already filed MCC. And here we are, with a referral for a little girl who fits all of our dreams, hopes, and expeditions. Since we already had a child with mega colon, I just knew what was important for us to take… in excessive amounts of… to China for when we traveled back in October – November 2008. Diapers – over 300 of them – over 600 wipes – large amounts of Miralax, Benefiber, and Fletcher’s Laxative along with a lot of tubes of diaper rash creams, and a few Fleet Enemas. These were items I just knew we would need to have with us over in China… because now we would have two children living with a mega colon. Right from the beginning, Annabelle was nothing like our Francesca. She bonded very well to me and cried very little when in China. She ate anything and everything and took her medications like a champ. Her poops were what I would call very normal and I knew exactly what needed to be done for when she did not have one.

Since arriving home, she has had no issues with her mega colon. She hasn’t even seen the gastro specialist because we are so not experiencing any issues. She poops normally and goes at least every day~ once a day. The only thing I do watch is her fiber intake. She too is on a high fiber diet and takes 3 teaspoons of Benefiber daily. The reason for the high fiber diet is because she DOES have a mega colon…. even though it is not causing her any problems. Now remember, she did have surgery on her mega colon for a life threatening blockage back in June 2007 and according to her Chinese medical records everything went well with the surgery. Now with that said, I often find myself questioning both of our daughters cases and treatments. Is Annabelle mega colon not affecting her life as much as it does Francesca’s because she had the surgery? We do not know. We have looked and looked for an answer to this very question in several areas but it always seems to be answered the same way… two kids… two different mega colons.

So there you have it. Our two daughters medical condition stories. I hope this helped you all understanding a little bit more of what we live with, how we are living with this disease daily, how it affects not only their lives but ours too, and what we are doing to help our children during their times of need.

We did submitted another MCC with our agency in December 2008 for a 3rd child from China that has been diagnosed with a mega colon, constipation, and/or bowel obstruction. Only time will tell if we will again be the lucky ones who will received another referral for either daughter #3 or son #1…. only time will tell.

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