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Rare and Complex Conditions

Rare and Complex Conditions
Maren and Liam – The Gift of Life: Organ Transplant Story Part III
03
Sep 2015
Maren and Liam – The Gift of Life: Organ Transplant Story Part III
Maren and Liam are both growing and thriving thanks to organ transplant and their organ donor. Their families are forever connected.
By: Social Media Team | 0
Rare and Complex Conditions
Liam and Maren’s Stories Connect: Organ Transplant Story Part II
02
Sep 2015
Liam and Maren’s Stories Connect: Organ Transplant Story Part II
Two families discover that their children both had an organ transplant on the same day, at the same hospital and with the same organ donor.
By: Social Media Team | 0
Rare and Complex Conditions
Liam’s Heart and Maren’s Liver: Organ Transplant Story – Part I
01
Sep 2015
Liam’s Heart and Maren’s Liver: Organ Transplant Story – Part I
Liam Sprague and Maren Foster both needed an organ transplant - a heart for Liam and a liver for Maren. Their parents share their stories. Part 1 of 3.
By: Social Media Team | 3
Rare and Complex Conditions
10 Things I’d Like Others to Know About Complex Regional Pain Syndrome
28
Aug 2015
10 Things I’d Like Others to Know About Complex Regional Pain Syndrome
Because complex regional pain syndrome is an invisible illness, here are 10 things I'd like others to know about it.
By: Marissa Boyle | 9
Heart Conditions
Top Questions About Genetic Testing for Cardiomyopathy
27
Aug 2015
Top Questions About Genetic Testing for Cardiomyopathy
Find answers to the most common questions about cardiomyopathy and genetic testing.
By: Thomas Ryan, MD, PhD | 16
Heart Conditions
Sharing Asia’s Heart Transplant Story Is Like Throwing A Pebble In The Water
20
Aug 2015
Sharing Asia’s Heart Transplant Story Is Like Throwing A Pebble In The Water
Asia hopes sharing her heart transplant story will help encourage others to consider organ donation. She had a transplant as a baby and is now thriving.
By: Dawn Werner | 2
Heart Conditions
One Year Post Open-Heart Surgery, Alexander Doing Well
14
Aug 2015
One Year Post Open-Heart Surgery, Alexander Doing Well
The Marshall's video, "Waiting for Alexander" featured their son's congenital heart disease diagnosis. A year later, he is indistinguishable from his peers.
By: Rob Marshall | 0
Cancer and Blood Diseases
Cancer-Fighting Cyclotron Arrives at Cincinnati Children’s Liberty Campus
10
Aug 2015
Cancer-Fighting Cyclotron Arrives at Cincinnati Children’s Liberty Campus
The last week in July marked a milestone in the construction of the Cincinnati Children’s Hospital Medical Center/UC Health Proton Therapy Center at our Liberty Campus – the arrival and installation of the cyclotron – a type of particle accelerator and the heart of the cancer-fighting proton therapy technology. And while the giant piece of
By: Social Media Team | 0
Heart Conditions
The Day Doctors Removed My Son’s PICC Line
22
Jul 2015
The Day Doctors Removed My Son’s PICC Line
My son, James Dickson, was born with tetralogy of Fallot, a congenital heart condition comprised of four heart defects which cause oxygen-poor blood to flow from the heart to the rest of the body. He was only eight months old when he had his first heart surgery. He was almost ten when he had his second.
By: Jennifer Dickson | 5
Rare and Complex Conditions
Tracheotomy Care: Tips for Transitioning to Home
17
Jul 2015
Tracheotomy Care: Tips for Transitioning to Home
Learn tips for how to care for your child’s tracheotomy at home — from the specialists at Cincinnati Children’s.
By: Amy Myer, MSN, CNP | 0
Heart Conditions
One day at a time: Recovery from heart failure, stroke, Castleman’s
14
Jul 2015
One day at a time: Recovery from heart failure, stroke, Castleman’s
Liam was a smart, funny and outgoing three-year-old boy. He walked and talked early and was advanced for his age. He loved dinosaurs and could even tell you which ones ate meat and which one could fly. On June 4, 2013 we took him to our local ER in Indianapolis for a cough that wouldn’t
By: Carolynn Sprague | 1
Child Development and Behavior
Gaining Independence: Jordan’s Journey with Obstructive Sleep Apnea and Down syndrome
09
Jul 2015
Gaining Independence: Jordan’s Journey with Obstructive Sleep Apnea and Down syndrome
Jordan has Down syndrome and like many children and teens with the condition, she also has chronic obstructive sleep apnea (OSA). Read about her journey.
By: Cheryl Caira | 11
Rare and Complex Conditions
Teen Advocating for Organ Donation Education in Ohio Schools
01
Jul 2015
Teen Advocating for Organ Donation Education in Ohio Schools
If you know me, you may notice that my life seems to have a recurring theme of nines. Until the age of nine, I was a perfectly healthy child; taking dance classes and playing in the local soccer league. But, at the age of nine, my immune system suddenly attacked my liver, causing it to
By: Emmalyn Brown | 2
Heart Conditions
15
Jun 2015
Camp Joyful Hearts: A Summer Camp For Kids and Teens With Heart Disease
Last Summer I had the honor of being an older camper and camp counselor at Camp Joyful Hearts, a residential summer camp for kids and teens that have heart disease. It’s such an amazing camp and experience for these kids because they don’t have to feel limited by their heart disease – there is a
By: Lydia Clark | 0
Rare and Complex Conditions
Managing Expectations After Surgery for Hirschsprung Disease
20
May 2015
Managing Expectations After Surgery for Hirschsprung Disease
All children with Hirschsprung disease require surgery. Learn more about what this surgery entails and what to expect after surgery.
By: Lyndsey Jackson, RN, BSN, CPN | 13
Rare and Complex Conditions
My Second Chance: Life After Liver Failure
19
May 2015
My Second Chance: Life After Liver Failure
When I was 12 years old, after just a few weeks of being sick, I was told I had liver failure and seven days to live. I was immediately listed on the transplant waiting list and miraculously a liver was found for me the very next day. This experience and my post-transplant journey have shaped
By: Julie Bonn, MD | 4
Rare and Complex Conditions
05
May 2015
Lily’s Journey with Linear Nevus Sebaceous Syndrome
Lily is a smart, active two year old and the light of my life. If you meet her, you might also notice that she has large, flesh-colored lesions on her face, head and neck. She was born with linear nevus sebaceous syndrome. In addition to the lesions, the syndrome also affects her central nervous system
By: Brandi Hall | 13
Fitness and Nutrition
I May Have Complex Regional Pain Syndrome, But It Doesn’t Have Me
27
Apr 2015
I May Have Complex Regional Pain Syndrome, But It Doesn’t Have Me
Someone once told me if you love something, you should keep it close to you. This is what running does for me. Since middle school, running has been one of my biggest passions. I loved being able to go out on a run and forget about all of my worries. In high school I was
By: Hannah Helmers | 4
Fetal Conditions
Premature Birth: 6 Factors That Can Increase The Risk
13
Apr 2015
Premature Birth: 6 Factors That Can Increase The Risk
Certain health factors are associated with prematurity. Read more about the reasons why and how they increase risk.
By: Louis Muglia, MD, PhD | 3
Rare and Complex Conditions
What’s Next For Meggie Zahneis
09
Apr 2015
What’s Next For Meggie Zahneis
No one really wants to go to the doctor. But sometimes, when you get to pretend you’re Peter Pan in physical therapy or make your own super balls with hearing aid mold material at the audiologist, exceptions can be made. My name is Megan Zahneis. I’m 18 years old, a senior in high school, and
By: Meggie Zahneis | 4
Cancer and Blood Diseases
Reds Opening Day, Welage Family Style
07
Apr 2015
Reds Opening Day, Welage Family Style
The tradition of Opening Day is a big deal in Cincinnati. The return of baseball is treated as a holiday and Reds fans celebrate accordingly. So when one local family couldn’t make the celebration downtown yesterday, they brought the celebration to the hospital. The Welage family usually spends Opening Day out with the crowd at
By: Social Media Team | 2
Rare and Complex Conditions
Music and Cystic Fibrosis – Love and Healing
25
Mar 2015
Music and Cystic Fibrosis – Love and Healing
To say that music is healing is a vast understatement. To me, music means having the ability to get lost in rhythms that warm your soul and transform your pain into joy. And when creating music, I find the experience to be even more powerful. I was diagnosed with cystic fibrosis, a genetic lung disease,
By: Samantha Boling | 6
Rare and Complex Conditions
Eczema Management for Kids
23
Mar 2015
Eczema Management for Kids
Though eczema is very common, every child’s eczema is different. Find some suggestions for how to treat your child's eczema here.
By: Leigh Ann Pansch, MSN, APRN, FNP-BC | 5
Rare and Complex Conditions
My Daughter’s Pancreatitis Is A Blessing, Not Just A Challenge
17
Mar 2015
My Daughter’s Pancreatitis Is A Blessing, Not Just A Challenge
“You want a child with a little fire in them…it makes them strong!” We always kept this in mind when Claudia was a toddler because that fire would get her to try stuff and accomplish things we did not think were possible. It’s a quality has become her biggest asset in dealing with challenges life
By: Diane Butterfield | 11
Rare and Complex Conditions
Rare Childhood Disease Needs Awareness: Interstitial Lung Disease
27
Feb 2015
Rare Childhood Disease Needs Awareness: Interstitial Lung Disease
ILD is an umbrella term for many different types of interstitial lung diseases, which have varying levels of severity. Learn more about these diseases.
By: Christopher Towe, MD | 4

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