Annie Hope’s story: Beating the odds after a spina bifida diagnosis

It’s that special moment expectant parents look forward to – finding out the gender of their baby. For Kimberly Munn and her husband, Jimmy, Oct. 17, 2017 is a day they will never forget.

“At our 20-week ultrasound appointment, we were so excited to find out if we’d be adding another boy or girl to our family,” Kimberly said. “However, the mood in the room suddenly changed when my doctor told us that our baby had Myelomeningocele, the most severe form of spina bifida where the spinal cord doesn’t fuse together properly. Her defect covered half of her back at the lumbar 1 location of the spine.”

While processing this unexpected news, the Munns were told their little girl could face a spectrum of disabilities including loss of mobility, seizures, learning disabilities, bowel and bladder issues, and she

would most likely need a shunt to drain cerebrospinal fluid buildup in the brain, a common condition in spina bifida patients. This would mean more shunt replacement surgeries as their daughter got older.

After many tears, lots of prayers and a rollercoaster of emotions, Kimberly and Jimmy couldn’t help but cling to a glimmer of hope. Then, a few weeks later, the couple received optimistic news – their daughter qualified for an experimental fetoscopic surgery to repair spina bifida in utero at Texas Children’s Fetal Center®, one of very few fetal centers in the country offering this minimally invasive surgical approach.

Without hesitation, the family packed their bags, moved downtown from their home in The Woodlands, and made the sacrifice of living without their other two children (ages 4 and 2) for the next five months while their family took care of them. Kimberly said living apart from her two babies was difficult, but she and her husband knew they had to do what was best for their unborn baby to improve her quality of life.

In Nov. 2017, Texas Children’s Obstetrician and Gynecologist-in-Chief, Dr. Michael Belfort, and their pediatric neurosurgeon, Dr. William Whitehead, successfully performed their daughter’s cutting edge in-utero repair for spina bifida at 25-weeks gestation. The repair changed her world.

“When our daughter was born on March 8, 2018, we named her Annie Hope because of the great hope we found in Texas Children’s Hospital,” Kimberly said. “Annie is blessed to have an amazing care team. These special people, like Dr. Whitehead, who we call our super hero, and Annie’s physical therapist, Roxana Santaella, who has been one of Annie’s biggest cheerleaders, have become family to us.”

Today, 2-year-old Annie Hope is a happy, intelligent and social toddler who loves to give hugs, blow kisses, wave “hello” and “bye-bye,” and play with her two older siblings, Lucy and James. Although Annie experienced a setback earlier this year – she had surgery to remove four large epidermoid cysts on her spine that caused her great discomfort and pain – her parents say Annie has certainly beat the odds.

Since the removal of her cysts, she is walking independently without any pain and transitioning up off of the floor without the assistance of furniture. She has received a new brace on her weaker right leg to help with stepping, and her neurosurgeon was happy to report that her brain shows no signs of hydrocephalus.

“Annie is our warrior,” Kimberly said. “When we got the spina bifida diagnosis, we were told our daughter would not be able to walk, but she has and continues to make great strides. We know Annie’s outcome could have been completely different had it not been for Texas Children’s. The amazing doctors, nurses, physical therapists and staff will forever have a place near and dear to our family’s heart.”

The Munns say their family, community, faith and the gift of Texas Children’s helped them get through challenging times…. and they have a special message for families facing similar situations:

“Don’t let any diagnosis be the end all. Never give up hope.”

Texas Children’s Fetal Center is among the nation's leaders in providing high-risk maternal care and the diagnosis and treatment of abnormalities in unborn and newborn infants. Click here to learn more about our Fetal Center and the fetoscopic spina bifida surgery pioneered at Texas Children’s by Obstetrician and Gynecologist-in-Chief, Dr. Michael Belfort, and Pediatric Neurosurgeon, Dr. William Whitehead.