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Rare and Complex Conditions

Rare and Complex Conditions
How Pectus Excavatum Brought Two Teens Together
20
Feb 2015
How Pectus Excavatum Brought Two Teens Together
Sam’s Story Pectus Excavatum! Sounds like an incantation from Hogwarts. Nope! It is what our 16-year-old son, Sam, was diagnosed with in July 2014. We always knew Sam had a noticeable indentation in the middle of his chest, but never thought the pediatrician would tell us, “This looks more pronounced since last year. Sam needs
By: Jennifer Stricker | 5
Heart Conditions
18
Feb 2015
3-D Heart Models Help Our Team Prepare for Complex Surgeries
The next big thing in imaging was recently used to help prepare our team for a rare and complex heart procedure. Over the last year, Cincinnati Children’s Heart Institute has been creating patient-specific 3-dimensional (3D) complex congenital heart disease models from computed tomography (CT) and magnetic resonance images (MRI). Our imaging physicians have created more
By: Gruschen Veldtman, FRCP, MBChB | 3
Cancer and Blood Diseases
Why is Sickle Cell Different in the United States Versus Uganda?
07
Jan 2015
Why is Sickle Cell Different in the United States Versus Uganda?
If your child is born with sickle cell in the United States, chances are good (95-99%) that he or she will survive to adulthood. That is not the case for a child born with sickle cell in Uganda or other African nations. Why the difference? As Dr. Russell Ware explains, it’s a matter of geography
By: Blog Editorial Team | 1
Rare and Complex Conditions
Life After Airway Reconstruction Starts with Soccer Practice
18
Dec 2014
Life After Airway Reconstruction Starts with Soccer Practice
After a colonic interposition, a laryngotracheoplasty & removal of his tracheostomy, Emmett has finally recovered since swallowing a button battery!
By: Karla Rauch | 2
Rare and Complex Conditions
We See Beauty, Strength, and Love in Our Music Video
24
Nov 2014
We See Beauty, Strength, and Love in Our Music Video
(Editor’s note: If the video above does not display for you, please follow this link). I love music. It has always had a strong presence in my life, so I knew that when I became a parent, I would incorporate music into my children’s lives as well. I have played guitar since I was 10
By: Emma Wendland | 7
Heart Conditions
The Heart Has A Hard Job to Do
21
Nov 2014
The Heart Has A Hard Job to Do
A couple of weekends ago, our family attended the 3rd annual Heart Institute Family Education Day at Cincinnati Children’s. We heard amazing speakers as we focused on the long term outcomes of children born with congenital heart defects (CHD). Our keynote speaker was Jennifer Page. Jennifer is mom to a little boy named Max who has
By: Leslie Sams | 1
Rare and Complex Conditions
When Life Gave Us Lemons
11
Nov 2014
When Life Gave Us Lemons
How we learned that our special needs child was becoming more “normal” and how we dealt with the idea of becoming different parents. Sometimes, life gives you lemons. You learn how to make lemonade and in the beginning, the lemonade is not very sweet. But over time, you perfect your recipe and lemonade becomes a
By: Kaytee Roettgers | 2
Rare and Complex Conditions
Alexis Shapiro Update: 7 months Post-Surgery
10
Nov 2014
Alexis Shapiro Update: 7 months Post-Surgery
It’s been seven months since my daughter Alexis had sleeve gastrectomy surgery at Cincinnati Children’s. Seeing as so much has changed for Alexis and our family in that time, I figured it was time to update the many people who followed Alexis’ story, helped us spread awareness of Hypothalamic Obesity and sent thoughts and prayers
By: Jenny Shapiro | 36
Cancer and Blood Diseases
Still Jersey Money: We’ll Make Science Count for Kids with Cancer
07
Nov 2014
Still Jersey Money: We’ll Make Science Count for Kids with Cancer
Last night, I had the privilege of helping Cincinnati Children’s President and CEO, Michael Fisher, accept a check for more than 1.3 million dollars from the Cincinnati Bengals. This charitable gift was the result of an unprecedented sale of Devon Still’s No. 75 jersey; it includes contributions from thousands of individuals around the country as
By: John Perentesis, MD | 1
Cancer and Blood Diseases
You’ve Given Our Fight a Greater Purpose
05
Nov 2014
You’ve Given Our Fight a Greater Purpose
Tomorrow evening, the Cincinnati Bengals will present a check for more than a million dollars to Cincinnati Children’s to fund new pediatric cancer research. It is the hand-off of money that was raised selling my No. 75 jerseys and the outcome of more generosity and support than I ever could have imagined for my daughter
By: Devon Still | 4
Cancer and Blood Diseases
Neuro-Oncology Team Takes Layup 4 Lauren Challenge
29
Oct 2014
Neuro-Oncology Team Takes Layup 4 Lauren Challenge
Editor’s note: if the video does not display properly for you, please follow this link. Drs. Mariko DeWire, Trent Hummel and Lionel Chow, along with the majority of Lauren Hill’s neuro-oncology team, took the Layup 4 Lauren challenge today.  The challenge, spinning around five times and shooting a layup with one’s non-dominant arm, is supposed to
By: Rachel Camper | 0
Cancer and Blood Diseases
We Need to Do Better for Patients Like Lauren Hill
29
Oct 2014
We Need to Do Better for Patients Like Lauren Hill
Lauren Hill's neuro-oncologist at Cincinnati Children's provides ways we can all contribute to the research of the fatal disease DIPG.
By: Mariko DeWire, MD | 2
Fetal Conditions
A Checklist for Making Difficult Decisions
28
Oct 2014
A Checklist for Making Difficult Decisions
Mothers. Mothers are the reason I decided to become a maternal fetal medicine physician. I am in awe of them each and every day. Their determination for doing what’s best for their babies is nothing short of inspirational. I recall witnessing maternal determination when, as a young faculty member early in my career, I took
By: James Van Hook, MD | 4
Rare and Complex Conditions
Jack’s Magic Ears
22
Oct 2014
Jack’s Magic Ears
My husband and I had our first child, Jack, last September. Jack is an amazing one-year-old little boy who has the ability to brighten anyone’s day with his smile. While he is like many other one-year-old boys in many ways, one thing makes Jack special: He has magic ears! Before last September, childhood hearing loss
By: Whitney Clark | 3
Heart Conditions
Growing Up in Heartland
16
Oct 2014
Growing Up in Heartland
You have probably never heard my son’s name, Max Page, but you might recognize him. He was the mini Darth Vader in the 2011 Volkswagen Super Bowl commercial. Soon after it was aired the commercial went viral and the media was tracking the kid under the mask. We gathered as family and decided that it
By: Jennifer Page | 2
Rare and Complex Conditions
Overcoming Her Diagnosis: Anorectal Malformation and Cloaca
13
Oct 2014
Overcoming Her Diagnosis: Anorectal Malformation and Cloaca
5 years ago my future mother-in-law said something to me that has stuck with me all of these years. It was a question that made me evaluate where I had been and how to have a better outlook on the condition I was born with: anorectal malformation (ARM) and cloaca. She asked me a simple question:
By: Chelsea Mullins | 16
Cancer and Blood Diseases
A Few Things I’ve Learned on Our Journey with Retinoblastoma
07
Oct 2014
A Few Things I’ve Learned on Our Journey with Retinoblastoma
Like many four-year-olds, my daughter recently started attending preschool. It’s an exciting milestone for any parent, but for me, it was an achievement that I wasn’t certain my daughter Khloe would attain. That’s because Khloe has bilateral retinoblastoma, which is an advanced form of cancer in both of her eyes. When children have this disease,
By: Alicia Gray | 2
Rare and Complex Conditions
The First Time Emmett Blew Out His Birthday Candles
03
Oct 2014
The First Time Emmett Blew Out His Birthday Candles
My youngest son, Emmett, swallowed a button battery on the day we were supposed to be celebrating his first birthday. Not only did it change our lives forever, but it also changed the significance of birthdays for our family. We weren’t sure that he would see his next birthday and that uncertainty made us appreciate
By: Karla Rauch | 4
Rare and Complex Conditions
After HLH: William’s Story
23
Sep 2014
After HLH: William’s Story
When my husband and I made the decision to take our 3 year-old son, William, to the emergency department at Cincinnati Children’s on New Year’s Eve 2007, we had no idea how incredibly ill he was. The diagnosis of hemophagocytic lymphohistiocytosis (HLH) just a few days after he was admitted that night, completely turned our
By: Ann Flaherty | 6
Rare and Complex Conditions
Life With EoE Times Three
19
Sep 2014
Life With EoE Times Three
I have three kids and a husband with EoE. So I guess that’s really four under one roof! I also have a baby that may be following suit; my guess is that she will probably be diagnosed in the next year as well. If you’re not familiar with EoE, or eosinophilic esophagitis, it is an
By: Kara Root | 19
Rare and Complex Conditions
My Message to Other Patients with IBD
26
Aug 2014
My Message to Other Patients with IBD
My name is Alex Jofriet. I am a college student. I live in Ohio. I am a patient mentor at Cincinnati Children’s because I have Crohn’s disease. Thus my area of expertise: patients with Crohn’s disease and ulcerative colitis. A mentor is someone patients can lean on, someone they can trust, and someone who, in
By: Alex Jofriet | 5
Fetal Conditions
Heartpedia: An Interactive 3D App Featuring Congenital Heart Defects
11
Jul 2014
Heartpedia: An Interactive 3D App Featuring Congenital Heart Defects
The HeartPedia app is designed to help users understand congenital heart defects with interactive 3D illustrations.
By: Ryan Moore, MD | 27
Rare and Complex Conditions
Adopting a Child from China and Finding a ‘New Normal’
20
May 2014
Adopting a Child from China and Finding a ‘New Normal’
Working at Cincinnati Children’s gives me the opportunity to meet inspiring families. Recently, I met one mother who told me the story of how she wouldn’t stop seeking answers for her son. And when she did find the answers she was looking for, she wanted other families facing the same condition to benefit from learning how
By: Rachel Camper | 1
Childhood Obesity
The Immediate Impact of the Sleeve Gastrectomy Procedure
29
Mar 2014
The Immediate Impact of the Sleeve Gastrectomy Procedure
As many of you were watching the details of Alexis Shapiro’s surgery unfold on Twitter (#HyObesity) last Friday, you might have been wondering about the benefits of the sleeve gastrectomy for patients with hypothalamic obesity. This procedure surgically removes 75-80% of the patient’s stomach leaving only the inner curve of the stomach (the “lesser” curve),
By: Thomas Inge, MD, PhD | 1
Rare and Complex Conditions
Illustrations Show Surgical Steps for Bariatric Surgery
21
Mar 2014
Illustrations Show Surgical Steps for Bariatric Surgery
Cincinnati Children's team of specialists provide illustrations and explanations of their four-step surgical weight loss procedure for teens.
By: Blog Editorial Team | 5

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