June Special Needs Focus (and Favorite Family Stories): Orthopedic

June 1, 2017 amniotic band syndrome, arthrogryposis, clubfoot, Favorite Family Stories, June 2017 Feature - Orthopedic, limb difference, Orthopedic, radial club hand, skeletal dysplasia 0 Comments

The term special needs can sound scary. But it doesn’t have to stay that way. Our goal at NHBO is to equip and inform parents – replacing fear with knowledge – as they navigate the beginning stages of special needs adoption. And then encourage and support those home with their special needs kiddos.

We do much of this through our Family Stories. In addition to our regular content, each month (except January) we feature Family Stories focused on a specific group of Special Needs. Here are some links from previous years organized by category:

February: Heart – 2017 || 2016 || 2015
March: Blood Conditions – 2017 || 2016 || 2015
April: Central Nervous System – 2017 ||2016 || 2015
May: Vascular – 2017 ||2016 || 2015
June: Orthopedic – 2017 || 2016 || 2015
July: Craniofacial – 2016 || 2015
August: Infectious – 2016 || 2015
September: Skin Conditions – 2016 || 2015
October: Developmental – 2016 || 2015
November: Urogenital – 2016 || 2015
December: Sensory – 2016 || 2015

June is Orthopedic month here on NHBO. And all month long, we’ll be featuring family stories of children with needs like amniotic band syndrome, arthrogryposis, ectrodactyly, Poland syndrome, osteogenesis imperfecta and other orthopedic needs.

Over the years, many family stories related to these special needs have been shared. And – during this month focusing on the orthopedic system – we wanted to take a moment to look back at just a few of our favorites.

Let’s go.



“Having cared for children with special needs, we realized that children are children and that there is an overwhelming need for families to adopt children with special needs. There was a point when we started to see beyond the label, “the issue,” the diagnosis, the difference… and we saw a child.” – Mandy 12/31/14

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Amniotic Band Syndrome


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Amniotic Band Syndrome: one of the primary causes of deformities of the fingers and toes found in children in China is a result of Amniotic Band Syndrome (ABS). ABS results in congenital birth defects believed to be caused by entrapment of fetal parts (usually a limb or digits) in fibrous amniotic bands while in utero. This is a birth defect that in no way impairs the cognitive function of the baby; it is strictly a physical issue.

In this post from 2016, mom Julie shows how although initially afraid of her daughter’s special need, she came to see in her daughter’s hands the hands and feet of Christ.

“These were His hands and feet. She was fearfully and wonderfully made. They were the hands and feet of our daughter. We accepted her file the week of Christmas, and she quickly became God’s gift of Gracie.” – Julie 7/26/16

Read more NHBO posts on this special need here.

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Arthrogryposis


Arthrogryposis (or AMC): a term used to describe a number of rare, non-progressive conditions characterized by stiff joints and abnormal muscle development. It is also referred to as arthrogryposis multiplex congenita or amyloplasia.

In 2015, Katie shares how, after receiving a referral with a clubfoot diagnosis, another adoptive mom led her to learn more about arthrogryposis – a condition that can be associated with clubfoot, which her daughter did, in fact, have.

“I have met many kids with AMC in all our travels to Philly and they all have one thing in common, perseverance. They all learn to overcome their disability, not let it define them.” – Katie 6/20/15

Read more NHBO posts on this special need here.

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Clubfoot


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Clubfoot (or talipes equinovarus): a common congenital birth defect present in approximately 150,000 newborns worldwide every year. When a child is born with the condition, the affected foot is turned upward and inward. If left uncorrected, the child would walk on the side or top of the foot. The goal of treating the clubfoot is to achieve a foot that looks and functions as much like a normal foot as possible.

Kelley shares information about clubfoot, as well as treatment options in the story of her son, Regis.

“Well our boy is a superstar! He is recovering well and we expect him to live a full life! We feel this “need” has just added to his spunkiness and independent personality. He rocks his cast and he pretty much rules the house these days!” – Kelley 1/22/14

Read more NHBO posts on this special need here.

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Dwarfism


Dwarfism (or skeletal dysplasia): a genetic condition that occurs in approximately 1 in 10,000 births. Achondroplasia is the most common form of skeletal dysplasia, representing about 70%, however there are over 200 different recognized forms of skeletal dysplasia. It is often characterized by disproportionately short arms and legs, but some forms result in proportionate limbs.

In 2013 Jodi shared the story of her two sons – both born with skeletal dysplasia.

“We pray that more people are not scared off by the diagnosis of dwarfism. There is amazing of support for Little People and for adoptive parents of Little People!” – Jodi 12/18/13

Read more NHBO posts on this special need here.

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Limb Differences


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Limb Differences: a term used in reference to the congenital (present at birth) absence or malformation of limbs.

One of our contributors, Mandy, first shared about her daughter Lydia Grace in 2014. Since then Mandy and her husband Bryson have shared more about Lydia and her brother Barrett who joined the family in 2015.

“I think the fact that surprises most people about Lydia Grace is that her limb difference does not affect her day-to-day functionality. We quickly learned that Lydia Grace can do anything with her five fingers that we can with ten – she just does it differently.” – Mandy 12/31/14

Read more NHBO posts on this special need here.

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Osteogenesis Imperfecta


Osteogenesis Imperfecta (OI): a genetic disorder characterized by fragile bones that break easily. Also known as “brittle bone disease,” a person is born with this disorder and is affected through his or her lifetime.

Jennifer, mom to two girls from China, shared about her older daughter, Olivia, who is thriving with OI. She includes frank information as well questions and answers to various things about this special need.

“I write this as Olivia’s mom and one who desperately wants to see more kiddos home forever with their families… My prayer is that hopefully in reading this, hearts and minds will be opened further and that the OI diagnosis won’t seem quite as scary.” – Jennifer 6/9/15

Read more NHBO posts on this special need here.

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Radial Dysplasia



Radial Dysplasia or Radial Club Hand: a congenital (present at birth) limb difference resulting from the partial or complete absence of the radius, the long bone on the thumb side of the forearm.

Laine shared the adoption story of two of her children, Kimmie and Quan. Kimmie was born with radial club hands.

“She can do everything with her hands! They are so functional, and that is another reason we are in no rush to do surgeries.” – Laine 2/16/09

Read more NHBO posts on this special need here.

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Scoliosis


Scoliosis: an abnormal curving of the spine – everyone’s spine naturally curves a bit, but people with scoliosis have a spine that curves too much.

Karen shared the story of adopting her daughter Rachel when she was five years old with a special need of scoliosis and pigeon chest.

“I find that I spend significantly more time focusing on the sweet young girl who was adopted at age five than the kid with a crooked back.” – Karen 6/3/16

Read more NHBO posts on this special need here.

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If you are parenting a child from China with a special need and would like to share your story on No Hands But Ours, let us know. Just complete this short form and we’ll be in touch with you soon!



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The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.