Finding the silver lining

How a diagnosis of Hirschsprung’s disease has led to profound learning

By Monique Mansour

Six hours after Camden Manning was born, her mother, Vanessa Yaldoo Manning of West Bloom­field, noticed something was awry. “Camden did not want to nurse, she vomited a green bile, and she did not pass her first stool.”

Her medical team thought it was a meconium plug, so an emergency surgery was imme­diately scheduled after an x-ray revealed a blockage. But it soon became evident that the surgery didn’t solve the prob­lem completely.

“After three surgeries at only three days old, along with multiple biopsies, the doctors diagnosed Camden with total colonic Hirschsprung’s dis­ease.” Camden was born with the disease, which affects the large intestine and sometimes the small intestine as well, as is the case for Camden. Hirschsprung’s causes problems with passing stool because of missing nerve cells in the intestines.

“Hirschsprung’s disease occurs in one out of every 5,000 births, and more often effects males than fe­males. There is no cure for this dis­ease, but there are many options to correct the bowels so that a healthy life can be achieved. The most com­mon option for treatment is called a pull through surgery, which we hope to have done for Camden soon,” said Manning.

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Manning isn’t exactly sure how Camden acquired the condition. “Hirschsprung’s can be genetic, but my husband, Andrew, and I have no family history of it on either side.” It is believed that a genetic mutation caused it in Camden’s case. “I have met one other Chaldean family with a daughter who has the same condi­tion, so I don’t believe it is more or less common in families of Middle Eastern descent,” said Manning.

Camden is the third child of Manning and her husband, Andrew. As a result, learning of Camden’s diagnosis was quite the shock, espe­cially after having no medical com­plications with her older children.

“You will always love your chil­dren no matter what. God has given Camden to us the way she is, because he knew we were strong enough to raise her as she is. The hardest two months we’ve ever faced was when Camden was born, but the doctors say the first five years will not be any easier.”

Despite the difficulties and the hardships, Manning is incredibly grateful for the people that have been put into her life through Camden’s diagnosis. “The medical professionals we have interacted with have been nothing short of amazing. We have met other families like us through social media who have become life­long friends. The Ronald McDonald Foundation has been such a gift to us and to others. They help families in need who have children receiving care in the hospital. After Camden turned one, I made sure to give back by bringing dinner for the families staying there.”

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Camden, now two years old, un­dergoes a specialized daily regimen as part of her medical treatment for Hirschsprung’s. “Each day Camden is hooked up to an IV nutrition feeding tube. It runs for more than ten hours while she sleeps. This past July, her surgeons added a G-tube in hopes to eliminate the need for IV nutrition feeding,” explained Manning. “In addition to her IV nutrition feeding, she is also receiving enteral feedings for more than ten hours while she sleeps. I change the dressing over her broviac, which must be performed in the most sterile conditions as possible once a week. Additionally, Camden has an ostomy bag, which we change every other day for her. Camden also takes several medica­tions by mouth daily.”

Despite the daily and consistent measures Camden has to undergo in order to live a healthy life, her spir­its are bright. “Camden has always been a very happy child, extremely strong-willed and super sweet at the same time. You honestly would never know that she had this condition unless her clothes were off. She is so proud of who she is and is very smart about her condition,” said Manning.

The journey Manning, Camden, and the family have had to undergo hasn’t always been easy, but the les­sons learned along the way have been profound and long lasting.

“Having a daughter with this ill­ness has taught me that we are stron­ger than we know. You don’t realize what you can actually accomplish when you truly don’t have a choice. Life is precious and life is a gift from God. I wouldn’t change Camden in any way. She is very special and I know she will do great things in this world one day,” said Manning. “Our daughter is a miracle - we wouldn’t have it any other way, I just pray that she has a normal life one day with minimal complications.”