My friend Holly is starting off our Special Needs Sunday posts! She has a beautiful family, 2 homegrown kids and 3 adopted kids. For this post, she is sharing about her youngest daughter, Mei. She offered to write about Mei’s special need, imperforate anus, saying, “[there are] a LOT of kids in China waiting with this SN… life does revolve around poop”. But, Holly and Mei’s story is beautiful. Holly shared the reality of adopting a child whose special needs weren’t all known or disclosed at the time of adoption and how their lives really can revolve around poop, but also how bright and beautiful Mei’s life is.
It’s been just over three and a half years since our youngest daughter joined our family via adoption. Oh the adventures we’ve had! Oh the lessons we have learned! Our sweet and sassy little treasure was born with a conditional called imperforate anus, also sometimes called anal atresia. What this means in laymen’s terms is that the opening to the anus is missing or blocked. Imperforate anus may occur in several forms. The rectum may end in a pouch that does not connect with the colon. The rectum may have openings to other structures. These may include the urethra, bladder, base of the penis or scrotum in boys, or vagina in girls. There may be narrowing (stenosis) of the anus or no anus. Many forms of imperforate anus occur with other birth defects.
Our daughter was also born with a tethered spinal cord, a heart defect and a neurogenic bladder with mild kidney damage. It sounds scary doesn’t it? All of those conditions were not disclosed to us prior to her adoption, but we did our research and we knew that those were all possibilities. When we met “Mei” she was 2.5 years old. She had received surgery to create an artificial anus in her birth country, so she did not have a colostomy. We were told that she was potty trained but thankfully we didn’t expect that to be the case. It was a good thing that we brought diapers! Truly, our time in her birth country was more consumed with comforting a frightened toddler than worrying about her medical conditions.
Once home we started in with testing and discovered the other conditions. We realized that Mei was going to need a corrective surgery due to poor positioning of the artificial anus. What could have been so very overwhelming truly was do-able thanks to an online support group of parents of children with imperforate anus. We were told that Mei had VATER syndrome. We were on a sharp learning curve!
Here we are present-day and she has had colorectal surgery with a few surprises, spinal cord surgery and open heart surgery. You would NEVER guess her medical past or present issues to look at her! She is a vivacious and absolutely ADORABLE six year old who is extremely intelligent and joyful. She is known for her chronic smile! She is usually smiling! We do daily large volume enemas using a bag and catheter system that is pretty cool. It keeps her colon flushed out so that she can wear panties just like other six year olds. She has always done fabulously with enemas- never crying or fighting them at all. We do have to make sure that she drinks enough water and we try our best to keep her on an every 24 hour enema schedule. Some children do well with just laxatives and fiber, but our sweet girl couldn’t control her BM’s with those things alone and enemas give her the freedom to just be a little girl, not a little girl in poopy diapers. We have been so blessed to find amazing online support and our insurance has covered all of her surgeries, our bowel management training and even most of her daily supplies!
Despite a long list of complicated sounding medical diagnoses, Mei is just our daughter. She swims and rides a bike (with training wheels!) and is an entire grade level ahead in school! She is active and curious and when asked recently what, if anything she would change about herself, she answered, “Nothing! I like myself just the way I am!” That answer made this Mama smile. 🙂
Are you considering adopting a child with imperforate anus? Holly has kindly offered to talk directly with anyone who has additional questions about this special need. If you would like to be put in touch with Holly, please leave a comment or email me.