special need highlight: adopting a child with anal atresia

April 12, 2014 by nohandsbutours anorectal malformation, Family Stories, imperforate anus, urogenital defects, urologic 0 Comments

Until we decided to pursue a special needs adoption from China I had never heard of anal atresia (more commonly called imperforate anus or anorectal malformation in the US). My first introduction to the term was via the special needs medical checklist from our agency, and I can remember reading through the list with our pediatrician and making notes as she gave me a very brief overview of each one. We indicated that we were open to a wide range of needs, but I really did not think anal atresia would be part of the picture for our future.

Many months later we received THE call from our agency saying they had a referral file for us to review and that this little boy had anal atresia. I, of course, went straight to Google on a quest to learn as much as possible about this special need, but I was already falling in love with the beautiful face looking at me from my computer screen.

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After doing as much research online as possible we took the file to our local International Adoption Clinic and went over it with an international adoption doctor. The doctor told us about the condition in general and then told us what he could specifically about our sweet little guy based on the information in the file (which wasn’t a whole lot). We soon found ourselves driving home with more questions than answers, and a big decision on our hands and hearts.

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I will be honest, I was scared. This was all new territory for us in every way and the unknowns were piled up high, but in our hearts we truly felt this was our son. After all, we had put our yes on the table and placed it in God’s hands years ago at the very beginning of our adoption journey, and this was no time to start second guessing, so I called our agency right then and there from the car and told them that we were saying yes!

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Today I am so thankful we said yes! Our Justin is the sweetest, most precious boy and he has blessed us beyond words! He has been through so much in his short life, but he is one of the happiest babies you will ever meet. He is undeniably cute and wins over everyone he meets with his heart melting smile. He is an absolute blessing and brings more joy to our family than we ever imagined!

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Anal Atresia/Imperforate Anus Overview Source

Imperforate anus is a congenital birth defect that develops in utero during the fifth to seventh week of pregnancy. With this defect, the baby’s anus (opening at the end of the large intestine where stool exits), the rectum (the last part of the large intestine), and nerves that tell the body when it’s “time to go” do not develop properly, preventing the child from being able to have a normal bowel movement.

In a baby with imperforate anus/anorectal malformation, any of the following can happen:
• The anal opening may be too small or in the incorrect location – which can cause painful bowel movements or severe constipation.
• The anal opening may be absent and the small intestine or rectum enters other parts of the pelvic area which can lead to chronic infections or bowel obstruction (a dangerous condition where stool becomes trapped inside the body).
• The anal opening may be absent and the rectum, reproductive system, and urologic system form a single channel called a cloaca, where both urine and stool are passed which can lead to chronic infections.

Anorectal malformations will always require specialized types of surgical repair, but the exact procedure will depend on the type and severity of the defect, if there are any associated health conditions (see below), and the child’s overall health. Even though corrective surgery may restore some function, important nerves and muscles that tell the child when the rectum is full of stool and help keep the contents inside may be missing or damaged, and a bowel management program may be needed as children get older.

About 50 percent of children with imperforate anus have other defects, including:
• Spinal malformations
• Kidney and urinary tract malformations
• Congenital heart defects
• Defects in the trachea (windpipe): tracheomalacia, or esophagus: esophageal atresia
• Missing arm bones, an extra finger or toe, thumb abnormalities
• Other defects in the digestive tract
• Down Syndrome

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~Guest post by Jennifer

Waiting Children with Anal Atresia

Aaron Update: My Family has found me!

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Aaron is a sweet little guy born June of 2013. Although he had little to smile about after first being born and then abandoned, this little guy started smiling at only a few weeks of age! Now his smiles are enhanced by lots of sweet giggles and hugs. Meet a baby boy who enjoys stable health and under the care of the orphanage in which he lives has a routine schedule and good eating habits. Born with a diagnosis of congenital anal atresia, he underwent corrective surgery in June 2013. Families interested in him need to be open to the possibility of Hepatitis B as we work to clarify his status. Designated to Dillon, contact them for more information.

Alyssa Update: My Family has found me!

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Sweet Alyssa ages out this November, at which time she will no longer be eligible to be adopted. She has waited for a family for a very long time. The summary of Alyssa’s special needs are mild scoliosis, one malformed ear (she’s mostly deaf in that ear but it COULD be fixed because this mom’s daughter says her friend can hear, it may just be blocked with tissue), and repaired imperforate anus with complete incontinence. For more information on Alyssa, read this advocacy post.

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This cuddly, extroverted boy was born June of 2011. Upon admission he was diagnosed with an imperforated anus fistula after operation. The operation was performed before his admission to the welfare institute at one month old. He is described as active and lovely. He is listed with Hand in Hand.

Lola

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Hi, I’m Lola and I am 4 years old. When I came into care I was diagnosed with something called esophageal and anal atresia. I had an operation to correct both of these in 2011, and I recovered well after some good nutrition therapy. I have a difficult time hearing because of my bilateral microctia, but I am able to follow instructions and hear my caregivers. When the doctors looked at my heart, they saw that I have left ventricular false tendons, but other than that my heart looked healthy. My file says that I also have a curved spine, but I am able to fully walk, run, and jump. I really enjoy being active and independent! For more information on Lola, please contact Great Wall.

Mary

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Hi! My name is Mary. I am a sweet little girl who has been diagnosed with postoperative anal atresia/fistula, vitreous opacity of right eye, a neoplasm of right ear, and congenital microphthalmus of both eyes. I am able to crawl around but I cannot walk on my own just yet. I still need support while standing up and if you help me I can walk slowly. My caretakers have a walker for me so that I can get around better. With my walker I am able to go places, sit, and stand up. I am learning how to eat with a spoon but I cannot see things that are far away due to my vision. I get along well with others and enjoy playing with the other children. My caretakers think I am very energetic and active. For more information on Mary, please contact Great Wall.

For more information on beginning the adoption process contact the Advocacy Team.



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