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Once the biopsy came back positive that Faith had Hirschsprung’s disease, her surgeon scheduled for her to have another procedure to determine where her transition zone was located. Hirschprung’s is, simply put, when the ganglion cells that help move things long in your intestines are missing. The transition zone is basically the point in the intestines where it goes from having cells to not having cells. Her surgeon told us that he felt it was better for her to have an ostomy placed for a while. Her little bowels had been through so much over the last 2 ½ months of life that they needed a rest. So, that was the plan. While we were in surgery we got a call from the nurse. She stated that Faith’s entire colon was affected and it extended into her small intestines. The doctor decided not to do the ostomy at this time because he wanted to find out exactly where her transition point was. I was so scared at this point. The doctor originally told us that if it was HD that is was a mild case, and NOW he was talking about her entire colon and part of her small.
So I must admit, I broke the number one rule and consulted doctor Google. I had never heard of HD before this. In my opinion, the information online is not very helpful and can be misleading. But, I was able to learn that Faith would be considered Total Colonic (+) with her entire colon and part of her small intestine infected. HD in itself is rare (1:5,000 births). But TCHD is even rare, with it occurring in 5-10% of HD cases. Math is not my strongest, but I think that works out to be about 1:250,000 births.
Remember I said my husband and I were relieved when we finally got the diagnosis of HD? Well, we were, but that did not mean that we did not shed many tears throughout this process. But, through this I refused to allow myself to question God and ask why. It was not for me to know why this happened to our little girl. But it did. I believe that there is some reason. And just like other storms that I have weathered in my life, I never knew why I was going through them. Sometimes it is revealed to me later on and other times it is not. While we still have some rough days and I know there will be rougher days ahead I am confident that our walk with HD is to help others. Faith is only 2 years old, but she is a joy. She has touched so many people’s heart. Someone close to me once said that they were praying that God take this condition away from her. Obviously, I don’t WANT her to have this. I don’t WANT her to go through this. But, that is not my prayer. My prayer is that others can see the miraculous powers of God through my daughter and her life. Her life already is a testimony to God. I will get to that later. My prayer is that others can see the glory and love of God through her as she goes through her life. That he uses her to show that even with a rare condition such as this, God can use you, and make your light shine bright in this world. I believe this.