In the 18th week of pregnancy, a serious developmental defect was diagnosed in our fetus – cleft spine with meningomyelocele. It was certain that if we continued the pregnancy, our life would change completely. We could not give our little girl up and have decided to do whatever it took for her to be here with us and lead a happy life despite the impending handicap.
We were given an opportunity to undergo a surgery that is not performed here in the Czech Republic and which rapidly improves prognosis for children with this diagnosis. After we went through all the necessary medical examinations and had passed the strict indication criteria, we traveled to Belgium where our daughter was operated by a team of experienced doctors before her birth, i.e. prenatally in the 24th week of the pregnancy.
One of the potential complications of this prenatal surgery was the risk of premature birth and that unfortunately happened to us. Rebeka Babova was born in week 26 of pregnancy and extreme immaturity was added to the underlying diagnosis.
Despite all the complications associated with such extreme immaturity, we began the rehabilitation of Rebeka just a few days after she was born. The rehabilitation is crucial for us. When Beky was born, she seemed to be paralyzed from her waist down. She could only draw her legs with her abdominal muscles and her legs were spastically stretched and pulled together, therefore it was not even possible to put on a diaper at first. We started with stretching her legs very soon. At the beginning, she could not even bend them at the knees and we knew we had a long journey ahead of us but we were hoping for a miracle. A big miracle. We started to stimulate points on her body according to Vojta’s method, and even though she was still in the incubator, she was already exercising three times a day.
Three months after birth, she had to have her second surgery because of a growing volume of brain ventricles. The V-P shunt has been inserted, a tube that drains excess cerebrospinal fluid and takes it to the tummy. After the insertion of the shunt, she began to bend her legs at the knees, until then it was only reflexively indicated during the practice of the Vojta’s method.
At home we continued to exercise in hope to get her legs moving even more. Unfortunately, we have failed to do so. From the knees down she remains completely paralyzed and the area around her hips is also not quite well. However, we try to work with what we have. To the Vojta’s method we have later added the exercise according to Bobath concept, ergotherapy, kinesiology tape, craniosacral therapy and at last but not least, hippotherapy, which Beky likes best.
In addition to her rehabilitation, Rebeka’s diagnosis is monitored by the specialists in neurology, neurosurgery, orthopedics, urology, proctology, nephrology, ophthalmology, psychology and speech therapy. She also is constantly undergoing further medical examinations.
Gradually, Rebeka’s legs began to get worse due to a fixed spinal cord and so she had to undergo a third surgery to release and repair her spinal cord. The recovery after this operation was long and challenging, but now Beky is back at full strength, if not further. She crawls on all fours, can climb furniture and stand up with the support of orthoses.
Yes, our life has really changed. We enjoy every little thing and take life easy. Every Rebeka’s smile confirms that we have made the right decision to fight together for our daughter’s life. In autumn we will celebrate Rebeka’s third birthday and what is normal and common for many (although we know that not for everyone) remains a great dream and wish for us – that our little girl could walk. We believe that even though our bar may have been set too high, together we will jump over it and that is our true strength.
We would like to thank everyone who has helped us and especially Rebeka to get where she is now – all the doctors for their professionalism, time and maximum effort, the nurses for their expertise, understanding and kindness, the physiotherapists for their maximum commitment to offer us all the available resources and family and friends for always being there for us…