|Our mission||Our Mission is to promote and enhance the lives of all affected by spina bifida.|
Spina Bifida Coalition of Cincinnati
|Ways to help|
Walk & Roll EventHelp with face painting, running game booths, and serve food at a picnic for the participants.
|How you help||The Spina Bifida Coalition of Cincinnati envisions individuals with spina bifida as confident, skilled and productive citizens, advocating for their own health and welfare. Volunteers make this possible.|
|About us||The Spina Bifida Coalition of Cincinnati strives to maximize the potential of every person living with Spina Bifida in the Greater Cincinnati area. We do this by advocating for improved public services, connecting people with others in our community via social events and social media, educating families, teachers, and professionals about what it means to live with Spina Bifida and the resources available to improve quality of life, and supporting our clients through financial aid, and small gifts when at clinic or in the hospital to let patients know we are thinking about them.|
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2 days ago
Thank you to everyone who came out tonight for the 2019 Walk & Roll Kick-Off at Braxton Brewery! It was wonderful to see each and everyone of you! ... See MoreSee Less
Sorry to have missed it!
I completely forgot about it dang it!
2 weeks ago
New board member, @Jennifer Ketchmark, stopped by the office this morning to drop off a check from the Scripps Howard Foundation for $1,250 as a contribution for her Walk & Roll team, WCPO. Thank you, Scripps Howard Foundation for your generous support! ... See MoreSee Less
3 weeks ago
We are pleased to announce the addition of Jennifer Ketchmark to our SBCC Board of Directors. Jennifer is the morning meteorologist for 9 On Your Side in Cincinnati. Outside of her passion for the weather, she loves to get immersed in the community through visits to area schools to talk about the weather, walking, biking and through service opportunities. She became connected with SBCC in 2017 after attending the Walk and Roll. She got to know the Wendel family and heard about the organization and what families living with spina bifida are looking to achieve. Jennifer says she is honored to join the board and looks forward to this year's Walk and Roll. ... See MoreSee Less
I got really excited when I saw her announcement on her Facebook page that she would be joining the board! I love Jennifer Ketchmark!
In very excited to. Welcome Jennifer!
Excited to have you on the board, Jennifer!
That's awesome! Love Jennifer Ketchmark!
Excited! Love her!
4 weeks ago
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1 month ago
In the wake of all of the publicity around the first fetal surgery at the Cleveland Clinic recently, we wanted to share the story of the first fetal surgery here in Cincinnati.
Cincinnati's First Open Fetal Surgery
by: Stefanie Hengge and Foong-Yen Lim, MD
In February of 2011, Sherri Davis received a phone call that no expectant parent is prepared for. Blood test results showed that at 18 weeks gestation, her son tested positive for spina bifida. What followed was a flurry of additional tests and discussions on Sherri’s qualifications for fetal surgery. Fetal surgery for spina bifida is one of the most remarkable developments in the history of treatment for birth defects where the lesion on a baby’s spine is repaired while the woman is still pregnant, avoiding further progression of the condition. Although life changing, it requires complete commitment from the family, including modified bed rest and frequent doctor’s appointments for mom after the fetal repair surgery. Processing the unexpected path her life was about to take, Sherri states medical professionals began to put her at ease. “I was told to stay as far away from the Internet as possible, but the doctors were always upbeat and positive about the life of my baby, never once mentioning abortion. We were given such a good outlook for life that there was never a doubt in my mind that everything would be okay.”
Learning that she satisfied the qualifications for prenatal surgery, Sherri met with a team at the Cincinnati Fetal Center (a collaborative program amongst Cincinnati Children’s Hospital Medical Center, Good Samaritan Hospital, and University of Cincinnati Medical Center) to discuss the benefits and risks to herself and the baby. Describing this meeting as “intimidating, but positive”, Sherri discovered that having surgery would be the best way to prevent further damage to her son’s spine as well as lessen the hydrocephalus that the shift in the hindbrain would cause. Though prematurity was a known risk of the procedure, avoiding brain surgery was all she needed to give the green light.
Describing the surgical procedure as a whirlwind, Sherri does not recall much of what happened due to heavy sedation. She was transported from Cincinnati Children’s Hospital Medical Center where the fetal surgery was performed to the fetal unit at Good Samaritan Hospital, where she recovered for 5 days, until she was considered stable enough to be released to go home. She was ordered to stay on modified bedrest until 37 weeks, when a c-section would be scheduled to deliver her son. But as Sherri was quickly learning, life doesn’t always go according to plan. Within an hour of being home, Sherri began experiencing pains that she soon learned were the beginning of labor. At 9:18pm on March 30, 2011, Jackson Riley entered the world through emergency c-section at 1 pound, 12 ounces.
During his 86 days in the Neonatal Intensive Care Unit (NICU), Jackson required no additional surgeries and the hydrocephalus seen in the womb diminished. Despite a few blood transfusions due to prematurity, Jackson pulled through without fail. Today, he is what Sherri describes as a “vibrant and exceptional 8 year old”. And while no child with spina bifida is without some ongoing medical issues, Jackson continues to excel; walking on his own and never needing a shunt to be placed to drain cerebrospinal fluid from any remaining blockage in the brain, a known benefit of the surgery.
Since closing the lesion in Jackson’s back in 2011, Cincinnati Fetal Center has gone on to perform a total of 53 open fetal MMC surgeries and 33 fetoscopic MMC surgeries. Fetoscopic surgery is a newer procedure using very fine instruments and fetoscope of 2-3 mm in size (0.08-0.12 inch) to reduce the size of the incision in the uterus and subsequent risk of maternal morbidity and prematurity. After fetoscopic surgery, patients are allowed to deliver vaginally at term unless there is any obstetric contraindication. These advancements continue to be groundbreaking in the treatment for birth defects, enriching the lives of those with spina bifida. Though it is not a cure, and is associated with maternal morbidity and preterm delivery, medical professionals at Cincinnati Fetal Center believe that fetal surgery improves some aspects of the birth defect that contribute to a better quality of life in these patients.
Sherri and Jackson are a testament to not only the significance of this medical advancement, but to the importance of attitude as well. When asked how she got through the difficulties of this experience, Sherri accredits the support of her family and her faith. “I was determined that no matter what, he would be living his best life, experiencing everything this life has to offer. My Faith. God will never give us more than we can handle but I was also determined that this would be a positive experience and life. Jackson was wanted and loved before I even knew I was pregnant. I had prayed for this baby before he was even a reality. God is good.” ... See MoreSee Less
I am 1 month past our own Fetoscopic repair with Dr. Lim (I am patient #32 😊) and I loved reading this account! How brave she was to be the first in Cincinnati ! Thank you for sharing!
Awesome article very well written Stefanie! Who just happens to be my talented daughter😊
Our daughter 19 years old and loving life!
My son now 17 was born premature and then diagnosed with hydrocephalus. He is fine but always wondered if there was a way to treat it before birth. Many say we were lucky he was premature so he got treatment sooner than if he was born full term. Thank you for your article. I'm sure this helps families going through this. Cincinnati Children's is an amazing place! They make miracles happen.
Great article! When I had my sweet boy he was diagnosed with spina bifida after I pushed him out (2004)! Surprise! I often wonder if in-utero surgery would have prevented him from needing a shunt. He’s 15 years old and 6’5” tall, plays basketball and baseball. Parents of babies with spina bifida, please know that spina bifida won’t be the most interesting thing about your child!
Stefanie you and Dr. Lim did a wonderful job on the article. Keep up the great work. God had you at the right place at the right time. 👍❤️
Wonderful and well written article with a positive outcome. Way to go CHMC! Glad you get to be apart of this, Stef.
Amazing story! Happy that all went so well! Thank you for sharing their incredible journey!!
Awesome Job on the article ladies. I always wanted the whole story but it felt invasive to ask.
So thankful you shared your remarkable story. Jackson is such a blessing!!
Great article Stef. You are an inspiration to others.
Stef! That is great! I know your heart was in it. I’m the proud Aunt!!
That’s a AWESOME STORY!!!! I Love story’s with a happy ending.🙂🙂🙂👍👍👍
What is the blood test that detects Spina Bifida? I thought it was detected by a sonogram.