“Brave and Determined”: Child Overcomes Spina Bifida to Take Her First Steps

By Jade Waddy

Fanny Mendez’s excitement about becoming a first-time mother quickly turned to anxiety when her 21-week ultrasound revealed that her unborn baby girl had serious health problems that could prevent her from ever learning to walk.

Doctors discovered that the girl had spina bifida, a birth defect that occurs when the spine and spinal cord don’t form properly. She also had hydrocephalus, a condition in which excess cerebrospinal fluid (CSF) builds up within the ventricles (fluid-containing cavities) of the brain and may increase pressure within the head, and she had a Chiari II malformation, a condition present at birth in which brain tissue extends into the spinal canal.

“I was scared, but the team at The Fetal Center at Children’s Memorial Hermann Hospital, gave me all of the information I needed and helped me to understand the difficulties my baby could face, including that she may be paralyzed from the waist down,” Mendez said.

Surgery Before Birth to Correct Her Spinal Defect

Mendez’s physician referred her to affiliated pediatric neurosurgeon Dr. Stephen Fletcher at The Fetal Center at Children’s Memorial Hermann Hospital. Dr. Fletcher and three other pediatric neurosurgeons performed maternal-fetal surgery to close the gap in the baby’s spine at 24 weeks gestation. The procedure takes about 30 to 60 minutes. Doctors make an incision in the mother’s abdomen similar to a cesarean section to expose the uterus, and then make a smaller incision in the uterus in order to operate on the spinal defect. 

“It was important to get Ms. Mendez into surgery in order to reduce the potential risks that her child would face throughout her lifetime,” Dr. Fletcher said.

Doctors were able to close the gap in the baby’s spine, but other complications remained a concern.

Born a Fighter

When Adeline “Theresita” Salgado-Mendez entered the world on Nov. 30 weighing 4 pounds, 4 ounces, she spent her first two months in the Neonatal Intensive Care Unit (NICU) at Children’s Memorial Hermann Hospital, where she proved to be a fighter.

“While she was in the NICU she fought really hard through other procedures,” Mendez said. “She had issues with sleep apnea as well as eating issues and swallowing due to the Chiari malformation.”

When she was 2 months old, Theresita stopped breathing. Her Chiari malformation caused severe sleep apnea which caused a pause in her breathing. Mendez rushed Theresita back to the hospital to be reevaluated.

“It was a scary time but Dr. Fletcher worked really hard to figure out what issues Theresita was having,” Mendez said.

Dr. Fletcher told Mendez that doctors needed to remove part of Theresita’s skull to release the pressure that was causing compression on her brain.

Four days after her surgery, Theresita was finally able to go home.

Physical & Occupational Therapy to Help Achieve Childhood Milestones

Theresita thrived at home, but was still having trouble meeting important milestones, such as sitting and crawling. She was referred to TIRR Memorial Hermann – Greater Heights Outpatient Rehabilitation for physical and occupational therapy. Theresita started her therapy at 6 months of age with Physical Therapist Lauren Bagley.

 “When we first started seeing Theresita at 6 months, a lot of our goals were based on basic developmental milestones such as being able to roll and sitting on her own,” Bagley said. “She progressed through those goals, so we began to work on more advanced milestones.”

Bagley wasn’t sure if Theresita would be able to gain independent mobility due to her complex medical history, but did not stop her from working hard to get Theresita to grow stronger and more independent.

Bagley spent a lot of time working with Theresita to determine if she could tolerate weight-bearing on her hands and knees as well as pulling herself up to stand.

“This was a big focus of her physical therapy because it would really help to lay the foundation of independent mobility,” Bagley added. “At around 22 months,  she really took off and began crawling short distances all of a sudden. The next thing we knew she was crawling longer distances and pulling herself up to stand without assistance.” 

Defying All Odds

With the help of a gait trainer and a physical therapist, Theresita was able to take her first steps at 18 months  and she eventually began using a posterior walker independently.

“Theresita has worked so hard in physical therapy and although it sometimes looks like play time for her, we have been able to make significant progress,” Bagley said. “Her mother has been phenomenal in ensuring Theresita also does activities at home that will help her. She is extremely supportive of her daughter which is important.”

Theresita continues to visit Dr. Fletcher for regular checkups as she grows.

“It’s rewarding to see how she has progressed thanks in large part to the aggressive care given to her by her mother and her rehabilitation team,” Dr. Fletcher said.

 “Working with Lauren has been such a great experience and Theresita loves her,” Mendez said. “Lauren always does her best to motivate Theresita to walk with her walker and even take independent steps, and she always tries to find interesting and new ways to keep Theresita motivated.”

Mendez never ceases to be amazed to see Theresita, now 2, walking.

“The beginning of her life was so brutal, but she always ends up surprising everyone with how brave and determined she is,” Mendez said. “My hope for her as she gets older is for her to know that she is not alone in this journey, to keep believing in herself regardless of what others think of her, to never give up, even when it seems difficult.”

For now, Theresita’s beautiful bright smile continues to light up the pediatric gym at TIRR Memorial Hermann – Greater Heights Outpatient Rehabilitation as she continues to work on walking on her own.

“I hope down the line she knows how grateful and blessed she is and that she can do anything she sets her mind to,” Mendez said. “She hasn’t let her diagnosis define who she is, and I’m so very proud and privileged to be her mother.”

To learn more about care for patients with spina bifida visit http://childrens.memorialhermann.org/spina-bifida/ and to learn more about pediatric rehabilitation visit http://tirr.memorialhermann.org/programs-specialties/pediatric-rehabilitation/

Comments

  1. What a wonderful read.
    Thank you for sharing this encouraging story.

    Antionette

  2. Such an amazing story! So proud of Theresita’s progress. She has such a great healthcare team, and is such an inspiration. Not enough can be said about how beneficial physical therapy is in the development of little ones. Great job, Lauren!

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