Rare and Complex Conditions
Liver Transplant Recipient Pursues Dream of Becoming A Pediatric Gastroenterologist
Julie needed a liver transplant when she was 12 years old. Her medical care team inspired her so much that she wanted to become a pediatric gastroenterologist. 18 years later, she is very close to accomplishing that goal! Read how her own experience has influenced how she takes care of patients.
10 Things I Want You To Know About Down Syndrome
By educating others, Kate's mom, Nicole, hopes to bring about awareness and understanding for her daughter's condition, Down syndrome. Read the 10 things she wants you to know about it:
My Son With Debilitating Functional Abdominal Pain Heads to College
Danny's mom is filled with mixed emotions as her son prepares to go to college. At one point, Danny's functional abdominal pain and nausea were so bad that she didn't think he'd be able to go to college at all. Read how a new neuro-stim ear device has resolved the pain and allowed him to get his life back.
A Letter to My Sister, My Daughter’s Kidney Donor
Many families are grateful for their siblings. However, Aimee is particularly thankful for her sister, Micheala. She donated one of her kidneys to Faith, Aimee's daughter, who was in kidney failure. Read a letter Aimee wrote to Michaela and learn how Faith is doing now post-transplant.
A Trifecta of Diagnoses: Chiari Malformation, Pectus Excavatum, Ehlers-Danlos
It wasn’t until Nicole was in her mid-twenties that she discovered she had three major health conditions: Chiari malformation, pectus excavatum and Ehlers-Danlos syndrome. Read about her long road to receive those diagnoses, and how she advocated for herself along the way.
A Ride For HLH Research
Our knowledge of how to diagnose and recognize HLH remains the biggest challenge when treating this condition. We have made great strides thanks to the collaboration of doctors from around the country and there is hope for HLH families.
Making Music Instead of Noise: Ephraim’s Journey with Three Genetic Disorders
With three rare genetic disorders, including a duplication at chromosome 2q13 and mutations in the OCRL1 and CACNA1A genes, there is no manual on how to treat and care for Ephraim. In order for his medical care to be harmonious, it needs to be coordinated across all disciplines, or "make music instead of noise."
Dancing Lead in Nutcracker One Year After TPIAT
Attie was diagnosed with pancreatitis when she was four year old. Read about her total pancreatectomy with islet auto transplantation (TPIAT) procedure and how she found determination through dance.
Twin-Twin Transfusion Diagnosis: Tips to Manage Stress
Receiving a twin-twin transfusion syndrome (TTTS) diagnosis is overwhelming. Typically the unborn babies’ lives are in serious danger, and often fetal surgery is needed. One of our fetal nurses offers some suggestions for making this difficult time a bit more manageable.
Handy Checklist: Traveling with Crohn’s, Ulcerative Colitis
Traveling with conditions like Crohn's and ulcerative colitis is possible with some up-front planning. Our handy checklist can help you prepare.
Kids With Epilepsy More Likely to Have Psychological Challenges
Kids with epilepsy are more likely to have psychological challenges, like emotion, behavior, learning or development difficulties. Read about why this happens and what can be done about it.
Questions to Ask Your Doctor About Prematurity
Every year in the United States, 380,000 babies are born prematurely. Women who are pregnant or considering pregnancy may be wondering what they can do to avoid it. Dr. Muglia explains three major risk factors and questions they can ask their doctor to assess their own risk. #WorldPrematurityDay
Teen with Cerebral Palsy Now Walks Unassisted Following Minimally Invasive Procedure
Sandy always knew that her son with cerebral palsy would need orthopedic surgery. They avoided it as long as possible. But when he began to lose mobility, stamina, and had 45-degree muscle contractures, surgery was imminent. Read how a less invasive procedure, guided growth of the knee, helped him to walk unassisted!
A Mom’s Mental Health Tips for Parents of Kids with T1D
Type 1 Diabetes (T1D) can take a mental and emotional toll on kids. If they're not well mentally, they will likely have more difficulty managing their condition. Read a mom's tips for supporting her daughter's mental and emotional well-being:
Acute Flaccid Myelitis: Frequently Asked Questions
Because acute flaccid myelitis (AFM) has been in the news lately, parents may be wondering what it is and how they can keep their family safe. While the condition is serious, the good news is that it's rare. Read answers to frequently asked questions by one of our infectious diseases experts.
22q11.2 Deletion Syndrome: Like Mother, Like Daughter
McKenna has her mother's eyes, hair, and smile. She also has the same deletion syndrome, 22q. What makes their story interesting is that her mother, Robin, didn't realize she had this syndrome until after McKenna was born. Read what this means and how they're celebrating small victories.
My Life with Constipation Before and After SNS Surgery
McCall has struggled with constipation her whole life. Sacral nerve stimulation therapy, which gives gentle electrical impulses that activate the bowel, has helped her have normal bowel movements. Read how it has given her the ability to pursue one of her dreams.
Melkersson-Rosenthal Syndrome: 5 Things To Know
A mother shares what she's learned about her son's condition, Melkersson-Rosenthal syndrome, in the hopes that it could prevent another family from their lengthy road to diagnosis.
Role Reversal: NICU Nurse Becomes A Patient
Melissa has been a nurse at Cincinnati Children's NICU for 16 years. But it wasn't until she became a patient herself that she could truly understand what her patients go through.