May Special Needs Focus (and Favorite Family Stories): Vascular

May 1, 2017 Favorite Family Stories, hemangioma, Klippel-Trenaunay Syndrome, May 2017 Feature - Vascular, port wine stain, Sturge Weber Syndrome, Vascular System 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 – 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

May is our Vascular month here on NHBO. And all month long, we’ll be featuring family stories of children with needs like hemangioma, lymphangioma, lymphedema, port wine stain, Sturge Weber Syndrome and other vascular needs.

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

Let’s go.


“You see, we know that her diagnosis is just a small piece of who she truly is. So I will save the part of who she truly is until the very end. As they say, let’s save the best for last!” – Kristen (5/1/15)


Kristi-4


“He shared some words that moved me profoundly: ‘…just remember that you are not considering adopting a condition, you are considering adopting a child, THIS child. Pray, and if God gives you peace, then He will give you what you need to parent THIS child, whatever the road brings…’” – Kristi (5/23/16)

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Congenital Hemangioma


Congenital Hemangioma: fully formed at birth, congenital hemangioma are non-cancerous tumors composed of both thickened skin and many thin-walled blood vessels. These birthmarks are raised above the surrounding skin and feel warmer to the touch.

In 2013, Kayla candidly shared her daughter Jubilee’s story, who had a congenital hemangioma.

“Sure, we checked “yes” in the box for that particular special need, but now we have three days to decide whether or not we want to check “yes” to it for the rest of our lives. Talk about a leap of faith!” – Kayla (6/17/13)

Read more NHBO posts on this special need here.

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Port Wine Stain



Port Wine Stain or Capillary Malformation: flat, well defined areas, range from pale pink to dark purple and are present at birth; Port wine stains may occur anywhere on the body, but they are predominantly found on the face and neck.

In this post from last year, mom Jill shows how parenting her daughter with a visible special need has led to some of the greatest blessings.

“To instill in her the knowledge that different is beautiful and unique is pure gift from the Lord.” – Jill 11/13/16

Read more NHBO posts on this special need here.

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Sturge-Weber Syndrome


Sturge-Weber Syndrome: also known as SWS, a congenital, non-familial disorder of unknown incidence and cause, characterized by congenital facial birthmark and neurological abnormalities.

Last year, Kristi shared how a fuzzy picture led her to adopt a daughter with Sturge-Weber Syndrome – and now their family now includes two precious daughters with SWS.

“Up until this point I had never even heard of SWS, so the learning curve was high.” – Kristi (5/23/16)

Read more NHBO posts on this special need here.

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Klippel-Trenaunay Syndrome and Parkes Weber Syndrome



Klippel-Trenaunay Syndrome: a rare congenital (present at birth) vascular anomaly that results in a large number of abnormal blood vessels; a complicated condition, it affects each child uniquely.

Parkes Weber Syndrome: similar to Klippel-Trenaunay Syndrome, a rare, congenital (present at birth) condition that results in a large number of abnormal blood vessels and is treated in much the same way as Klippel-Trenaunay. In contrast to K-T, children have arteriovenous malformations that can cause heart failure.

Cornina’s mom, Kristen, tells how her daughter’s original diagnosis of Sturge-Weber Syndrome expanded to include Klippel-Trenaunay Syndrome after they came home. She shares in depth information about both syndromes.

“This is what we now know. That we have to push our fear aside. That we are her parents and she is our daughter. And we will fight to the end to make sure we find the right specialist and that we build a team of doctors knowledgeable in her condition.” – Kristen (5/1/15)

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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