On August 7, 2010 my daughter Alejandra was born. Immediately, even before I could hold her, she was rushed off and bandaged from just below the chest down past her hips. Alejandra was born with a birth defect called Spina Bifida. It is a neurological birth disorder that happens very early on in pregnancy. There are 3 types of Spina Bifida, Alejandra was born with the most severe called Myelomeningocele. Myelomeningocele Spina Bifida is when the neural tube along the spine fails to close allowing a portion of the spinal cord to protrude from the back thus requiring surgery immediately at birth to close the opening thus explaining the bandages.
Along with this come all sorts of other complications and depending where along the spine the opening is results in partial or complete paralysis of the parts of the body that are below the spinal opening. For Alejandra it was in the lumbar region of her spine, an L3-L4 diagnosis, so things affected are her bladder and bowels, hips, legs and feet. She currently takes medication 3 times daily to relax her bladder which then leads to constipation and so for this reason she also takes restoralax to help with constipation. She also requires catherization every 4 hours to drain her bladder.
Her first month of life was spent in Sick Kids Hospital, Toronto. It was a stressful time. Emotions were running wild. We had doctors and nurses popping in and out of her room every 2 hrs for 3 weeks straight. Checking this and that, testing this and that & probing with this and that. There was no peace or even a minute to enjoy her let alone some privacy to pump or feed her. On top of all that every few days she was sent for an ultrasound to check the fluid in her brain. They were concerned about hydrocephalus. Hydrocephalus is a buildup of cebral spinal fluid also known as water on the brain. This is a condition that typically goes hand in hand with Spina Bifida. Alejandra seemed to be tolerating the extra fluid and showed no symptoms that a shunt was required. This is when a synthetic tube (shunt) is placed into the ventricle of the brain to help divert cerebrospinal fluid to another part of the body thus releasing the added pressure on her brain. Since she was showing signs of improvement and her back was healing well, they discharged us and we were able to bring her home. A time when most people would be excited was a time filled with lots of fear for me! I was happy don’t get me wrong, there was just so much instruction and uncertainty. Every week for the first month home we had to return to Sick Kids to see her Neurosurgeon, Dr. Kulkarni who monitored the fluid in her head. His instruction was always the same, watch for symptoms like her eyes sun setting, irritability, lethargic etc. If we were to see any of that to bring her in immediately otherwise we would continue seeing him, now only once a month. At 4mos to the day she was born, we took her back to Sick Kids emergency because her once non-symptomatic condition had changed. She was prepared for surgery and on December 8th, 2010 a programmable shunt was inserted into her brain.
During all of that because Alejandra was also born with a left club foot and dislocated hips called hip dysplasia, we also had follow up visits with Urology for her bladder and bowels as well as Orthopedics for her hips and feet. Treatment to correct her club foot started in October 2010 with a method called Ponseti. This is a manipulative technique of the bones without using surgery. Every week for 3 months I drove her the hour back to Toronto, where each time her ankle bone was slowly manipulated and a new cast up to her hip was put on to hold the foot in place. During the last part of this process they cut/released the Achilles tendon before putting on the last cast, which she wore during her shunt surgery. The final cast was removed in Jan 2011. At which time boots and bars were placed on her feet. They were supposed to remain on and off up to the age of 3 however her skin bruised and reacted so badly that they decided against them and instead they put on a softer leather boot on the left foot only. This she wore off and on until Oct 2011 when she was fitted with her first AFO’s (Ankle Feet Orthotics) and stander. A stander is used to get her up on her feet and to assist with weight bearing thru her hips down to her feet. The first AFO’s had many adjustments up until March 2012 when again she went under the knife. This time they cut the Achilles tendon on both feet and wore a cast on both feet for 6 weeks and then refitted for new AFO’s.
Physio is also part of our daily routine, where she learns techniques that will ultimately lead to her independence. Covered by our medical/government system is 1 hour a week for 6 weeks where she is then required to take 8 weeks off. In a 1year period our government feels that 24hrs a year is enough physio a child born with challenges needs. So at my own cost and with support of family, friends and organizations like Give a Miracle a Chance I have been lucky to be able to enroll Alejandra in Conductive Education at The March of Dimes, Toronto. Here she learns techniques that will ultimately lead to her own independence.
Alejandra is now 3 years old and despite all her challenges she is a beautiful, smart little girl with a strong personality…I think! When people meet her for the first time they always say, “you wouldn’t even know there is something wrong.” Her milestones have come at her own pace and when they do come they are celebrated with sooo much pride! She still has a team of doctors we visit on a regular basis who follow up with her on going, lifetime care. Then don’t forget there is physio, occupational therapy, speech therapy and Conductive Ed that we also attend. I am now a single Mother with full custody working very hard to give my daughter everything she needs to have a better quality of life. Since I am the only one in the picture it has become a full time commitment for me. Sometimes it makes things financially tough as not everything is covered by our health care but I can’t put a price tag on the benefits she gets from all of it. So I am grateful that up to this point, family and friends have helped me find creative ways to make it all possible for her and I to walk this journey together.
I love my little peanut, she makes my heart sing and out of all the bad has come a whole lot of good! I no longer pray for the things I cannot change but rather…that no matter what may come our way I have the wisdom and courage to always do what is right!