Let me start with the beginning. We decided we wanted to adopt from China. That I dont really know why...was just always drawn to little asian girls and I guess that was the big plan for us! Our daughter was Asian and we were led to her! We knew when we chose China that we would be taking on a special needs child since a healthy child is about a 7 year wait. And trust me, we are not getting any younger..that was not going to happen. So when we started researching the different special needs we knew we wanted something pretty minor. We have 3 young boys and didnt want to take on too much and neglect the boys with the amount of care she would need. So we first just checked of minor heart condition. For example, a small hole in their heart, that typically closes on its own. That was the only thing we checked off on our list for the first 9 months or so. As we waited, our agency told us that we would be waiting up to 2 years to be matched with a young girl with this condition. Then they started saying that really you cant find a child with just small hole, that they usually have something else. So we did some more research and started meeting more adoptive families and learning more and more about other special needs. I know some people are not big fans of Facebook but it has been AMAZING for us (or really just me) in this adoption process. I am on support groups with people who have adopted and on groups with other people who have adopted with Mayleigh's special need. I have learned so much and found so much helpful information!
So we added a few more things to our checklist of needs we would be open to. And when we got the call about Mayleigh they said she had imperforate anus and she had the surgery to correct it. She did have that condition but the surgery we found out was just a surgery to give her a colostomy so she could poop. She does not have the opening in her anus to poop. Her bottom is formed and it all looks normal, just the opening is not there. We were terrified after hearing this. We had of course fallen in love with her picture and thought for sure we were going to take her. Then 24 hours after getting her file, we found out what that surgery was. We were kind of given misinformation from our agency. (not on purpose, they just didnt understand either). Long story short, we talked to some doctors, talked to other people who had kids with this issue and just couldnt say no to this precious girl. We knew going into this that it was going to be a hard road, especially with her surgeries but we were willing to take it on to give this little girl a better life.
When you get the files from the agency, the medical records from China are not always accurate. So they had mentioned that she may have what is called cloaca. This means there is only one orifice when there is suppose to be 3. The anus, the vagina, and the urethra (or where she pees). So when we got her, it was confirmed that she only has the one. She does not have a vagina hole. Just the urethra from where she pees. It also looks normal, just needs to be opened there. I am still not an expert at all this so this is to the best of my knowledge. :)
So the first step after doing some testing on the anatomy down there, is surgery to open the orifices. Then we will allow that to heal for 8 weeks and then they will do a second surgery to take down the colostomy and reconnect things so she can poop from her bottom. It is going to be a hard 6 months. We will probably start the surgeries in a few months. We have found that one of the best surgeons for pediatric colorectal issues is in Cincinnati. The head surgeon though is opening a new center in Columbus, OH so we may be heading there now.
It is common for kids with this kind of anatomy to get UTI's. The orphanage told me that she has only had 1. They said some kids with these issues get them all the time. So I guess we are lucky she has only had 2 now.
I became more and more comfortable with her condition the more I talked to others and did research. Are we still scared out of our mind for whats to come with her.....HECK YES!!! But we are taking it one day at a time for now.
I was nervous about taking care of her stoma. (the colostomy) It is on her side and its kinda gross looking honestly and she poops out of it. Normal to feel nervous about it, I guess. But it is really no big deal at all. We have learned how to care for it and its not a big deal now. She needs to be changed frequently so that has been more of the pain. And we are going through LOTS of diapers. In China they dont have the money to use colostomy bags so in the orphanage they just use a bigger size diaper and wrap it around her stomach. Then they put a diaper on the normal way for her pee and the normal diaper just covers the side stomach one right up. You can't even barely tell she has 2 diapers on. Some people even after coming home from China have found that diapering their child the "China" way is easier than using a colostomy bag. We arent sure what we will do when we get home. We may try both and see which is easier for us. The hardest part will be changing her on the airplane with a 13 hour flight!! EEEKKK!! It takes 2 of us right now to change her and there is a lot of stuff you need. Wipes, cream, wet paper towels, and 2 diapers. Can you imagine us in the airplane bathroom doing that??? Not sure how that is going to work yet!!
How could we say no to this sweet face...
Hi Erin, The fact that she hasn't had the corrective surgeries in China is GREAT!!! Now Dr. Levitt and his team will have a clean palette to work with NOT having to fix mistakes like my daughter is going through.
ReplyDeleteCheers,
Carmel and B'Elanna