November Special Needs Highlight (and Favorite Family Stories): Urogenital

November 2, 2017 ambiguous genitalia, anorectal malformation, bowel management, cloaca, congenital adrenal hyperplasia, Disorder of Sexual Development, Favorite Family Stories, hypospadias, imperforate anus, incontinence, November 2017 Feature - Urogenital, undescended testicle, Urogenital System, VACTERL 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 – 2017 || 2016 || 2015
August: Infectious – 2017 || 2016 || 2015
September: Skin Conditions – 2017 || 2016 || 2015
October: Developmental – 2017 || 2016 || 2015
November: Urogenital – 2017 ||2016 || 2015
December: Sensory – 2016 || 2015

November is our month to focus on urogenital needs. And all month long, we’ll be featuring family stories of children with needs like anorectal malformation, cloaca, hypospadias, ambiguous genitalia, and VACTERL.

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

Let’s go.



“Our journey has been long. Our journey has been hard, but it has also been so worth it!”Heidi 8/13/15

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Anorectal Malformations



Anorectal Malformations: (or ARMs – sometimes referred to as anal atresia and/or imperforate anus) are defects that occur during the fifth to seventh weeks of fetal development. With these defects, the anus (opening at the end of the large intestine through which stool passes) and the rectum (area of the large intestine just above the anus) do not develop properly.

In this post from 2016, mom Ileah shares the joys and struggles they had in the days, weeks and months following their son’s adoption.

“God knew what we could handle, even we didn’t… not until he was in our arms at least. Now we know we can and will do anything for our little warrior.” – Ileah 11/1/16

Read more NHBO posts on this special need here.

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Cloaca



Cloaca: a type of anorectal malformation in which the rectum, vagina, and urethra open into a common area or single common channel.

In this post from 2015, Stephanie, mom to two daughters with urogenital needs, shares her answers to questions about parenting a child with cloaca.

“These little girls are beyond precious! Our cloaca child is the light of our lives! They need you to come for them and you will reap a million times more than you invest.” – Stephanie 11/13/15

Read more NHBO posts on this special need here.

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Cryptorchidism


Cryptorchidism: the most common congenital abnormality of the genitourinary tract. Cryptorchidism is the absence of one or both testes from the scrotum. Most cryptorchid testes are undescended, but some are absent (due to agenesis or atrophy).

An anonymous mama tells her story to adopt a son with undiagnosed cryptorchidism (along with other urogenital needs) and how they have navigated the challenges they faced as a new family, one day at a time.

“God’s hand of protection and healing hands held him before he joined our family. God is so good!” – anonymous mama 12/14/2016

Read more NHBO posts on this special need here.

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Hypospadias



Hypospadias: a congenital defect in which the opening of the urethra is on the underside of the penis. The urethra is the tube that drains urine from the bladder. In males, the opening of the urethra is normally at the end of the penis. Hypospadias is a common birth defect occurring in approximately one in every 250 newborn boys; the cause of hypospadias is usually unknown.

Past contributor, Kam, shares the successes and challenges of walking through numerous surgeries her son had to endure to repair his hypospadias.

“Make no mistake. We would do this over and over again. We would choose him again and his SN again and the whole lot of it again… And no, we didn’t anticipate that Gabe would need this many surgeries. And no, I wasn’t open to some of them when checking off boxes on the waiting child application. But I’d do it again in a heartbeat.” – Kam 3//01/2014

Read more NHBO posts on this special need here.

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Incontinence


Incontinence: Incontinence is defined as a problem controlling urination or defecation. A person may be incontinent of urine, stool, or both.

Regular contributor, Jennifer, put together a hugely informative post for families parenting children with incontinence.

“When we were reviewing our son’s file I was completely clueless about his special need and had never heard the term bowel management. What we did know was that there was a better than average chance that our son would need some type of bowel management in order to empty his colon regularly and achieve what is known as social continence. I know from experience that the words bowel management can be a bit scary and overwhelming for prospective and newly adoptive parents.” – Jennifer 6/11/2017

Read more NHBO posts on this special need here.

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Underdeveloped/Ambiguous Genitalia



Underdeveloped/Ambiguous Genitalia:
Disorders of Sex Development (DSD) are defined by the medical community as, “Congenital conditions in which development of chromosomal, gonadal or anatomic sex is atypical.” When reviewing a child’s file their special need may be referred to as “hermaphroditism”, “ambiguous genitalia”, “vaginal atresia”, “micro-penis”, etc. It is nearly impossible to know which DSD your child has based on those terms alone.

An anonymous mama shares her story of adopting a daughter who. once home, was diagnosed with a DSD of Congenital Adrenal Hyperplasia.

“I cannot imagine our lives without our precious girl. She is almost five years old and lights up our house with silly, giddy, contagious laughter. All five of her siblings think she is entirely cute and everyone she meets falls in love with her… She is the most loving, sweet, friendly, witty child I have ever met.” – an anonymous mama 11/20/2015

Read more NHBO posts on this special need here.

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VACTERL



VACTERL: an acronym used to describe a series of non-random birth defects which occur together.
V stands for vertebral anomalies
A stands for imperforate anus or anal atresia
C stands for cardiac (heart) defects
TE stands for tracheal-esophageal fistula (TEF) or esophageal atresia (EA)
R stands for renal or kidney anomalies
L stands for limb abnormalities which can include a displaced or hypoplastic thumb, extra digits (polydactyly), fusion of digits (syndactyly), and forearm defects such as radial aplasia

The most common heart defects seen with VACTERL association are ventricular septal defect (VSD), atrial septal defects (ASD), and tetralogy of Fallot (TOF).

Past contributor, Amy, recounts their family’s journey to adopt a little girl with numerous acronym-ed special needs, including VACTERL.

“What if we had said no to it all at the very beginning. I shudder to think of all we would have missed out on. I spend my days with the most beautifully, spunky, energetic, loving, hilariously sassy, independent, brilliant, adorable Chinese girl with more “defects” than I can count on one hand. I wouldn’t change one thing.” – Amy 3/07/2014

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.