JOURNEY OF A BEAUTIFUL ANGEL WITH SPINA BIFIDA AND HER PHYSIOTHERAPIST

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• On September 28, 2019
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One day I was sitting in my clinic. A lady came in her early forties carrying a beautiful angel in her lap. As she was settling her child my mind was stuck at the sparkling eyes of the child sitting in front of me. Such beautiful eyes, full of brightness with little hesitation, looking all around. A few seconds later she took out a bunch of medical records, I asked her the purpose of visit to me. She said my child is unable to walk. She is diagnosed with Spina bifida. I was really hurt and asked God why you did this to such a beautiful child. My mind was full of emotions theories and consequences of this rare congenital disorder in her life. I proceeded to the clinical questionnaire for more clarification towards the rarest of rare neural tube defect which has led her life compromised, dependent for locomotory needs, fear of urinary tract infection as a regular event. I looked at the child once again from top to bottom as if my eyes were trying to scan her. My eyes confronted with her head size which seems to be a little bigger from any other normal size of children of the same age. I turned towards the mother and asked her about my doubts.  One another shot of Arrow hit at me, it was painful really painful which spell “Hydrocephalus” in which brain cavities get filled with fluids. These extra fluids put pressure on the brain and it should be removed out of the body. So she was having a shunt in her brain to the abdomen which communicates to pass extra fluid to the peritoneum for its absorption. Oh,” my heart was sinking ….such a painful life she was living with …..I controlled my feeling and proceeded towards for further history of the mother’s pregnancy, family background, and other clinical findings. The mother seems to be lost for a few minutes, here’s the culprit which might have lead to this neural tube defects. “I had not taken Folic acid, as I kept skipping it on many occasions. Her face was showing her grief as if she is trying to say I am sorry for my child. I questioned her antenatal checkups. What about dual scanning which is capable of predicting the malformation of the fetus.  God knows it was unable to predict. she delivers the child with Spina Bifida.  There was a huge Storm in their life. Parents were lost. Doctors too were surprised. A long process of Medical and surgical intervention started. A huge time span was gone in the hospital. Parents lost their beautiful moments of parenthood. All these were emotional, loss of time and money everything as if time has stopped moving, finally, the team of doctors did surgical interventions to close the neural tube and fixes shunt in the brain. The child begins with the process of recovery. How difficult was it to keep a child in one position of lying on tummy, for a long duration? The mother stopped all the courses. The only dream left with her, “whether her child will ever walk, whether she will hold her finger and ask her for a walk, whether she will be independent. Parents mind was now settled with the fact of spina bifida. But they kept their belief on God and started with the rehabilitation of their child. With the help of Physiotherapy, she started sitting and crawling.  She is now 5 years old sitting in my clinic with the hope of ambulating herself.

Importance of physiotherapy

Physiotherapy planning at day 1

As a pediatric Physio, I took a pledge in my heart that I am going to make this child walk and independent. All the physical examination with motor and sensory components keeping the details of muscle strength examination was done. Her physiotherapy journey started. A journey that only to is walked not knowing where it will end and when. Only hope and confidence to refuel our journey from time to time. I planned a Physiotherapy journey with this tiny patient. Physiotherapy sessions included strengthening exercises, range of motion exercises, balance training, stretching and most important was task-oriented sessions in which I always prefer to include exercises in the forms of games which helps the child to be interested in doing all the exercise sessions happily. Most of the time session wraps up in 1 hour depending upon the child’s mood. You can understand a child’s behavior, it was not easy for me to make her understand a 5-year-old child to do exercises. But with God’s grace, I was successful in establishing a connection with her. She started enjoying her mat exercises.

Initial stage exercises

Straight leg raises withhold of 10 seconds 10 times. Isometrics of Glutes and Hamstrings. Adductor strengthening by taking leg apart and bringing it close. Bridging withhold of 10 seconds of 1o set . 10 sets lying on her tummy taking her legs up. 10 holds into 10 times bringing her leg inside. Weight-bearing exercises on her foot. Stretching exercises for her tight pelvic muscles. Balance exercises in standing which included standing in front of the mirror and picking up her favorite colorful rings from ground to table.
Sit-to-stand. This was the initial milestone of the road over which we were walking. The journey was difficult, not an easy one. Foot muscles below the knee were unable to support walking and always peeping like a stone on pebbles hurting both of us. But still, we were walking every day with the hope of reaching our endpoint of the journey.

Exercises regime after 3 months

3 months was over with the same streaming of Hardy and Rocky path. Then I close my eyes hold her hand firn and said to her mother she will walk one day. Again journey started with new protocols of exercises which was more focused on her balancing and strengthening I incorporated walking with support despite knowing Its big difficult task for me as well as her. Legs We’re trembling. She fell down many times. Each time I was there to hold her hand with a smile on my face and quotes “dear you are one of the bravest and courageous Children Of The God “, The Falling Down is a sign of Braveheart. this phase sees of our journey showed signs of improvement. Every day I pray to God that today something good should happen with her. I was at home in the late evening having dinner with family, phone Bell is ringing, a number flashed, I  picked up the cal.  Her mom was crying, my heart is started beating with speedy pace,  I asked,  her what happened she is jumping and weeping and saying mam she is standing from the past 10 minutes independently. My eyes were full of tears, emotions were pouring. Thank you, God.  It was A Remarkable achievement. The journey seems to be an easy pace but it’s no easy task. Next evening my tiny friend came with lots of a story about how she felt when she was like a tall independent bird. The words were magical.

Now another full of power pack session started with some new exercises and activities like standing with more balancing in the form of clapping hands overhead almost 20 Times. Back to school time drilling exercises 20 Times. Sit-to-stand. Picking up objects and arranging in one particular pattern.

Standing in front of the mirror and doing sideways leg movements. With support stairs climbing although it was a tough task for the child as well as me. We were exhausted at the end.

Gait training

By the end of six months of rehabilitation, she was able to climb stairs with support and stand independently. The child is now supposed to go to school. So the mother worried about her, how will she manage in the school. Now the time has come to make her walk without mothers’ support. I planned her to walk with crutches. Mother got panicked. Anyhow, I make her understood the fact that at least her child will able to roam without your support This was really a big challenge. Lack of equipment for balance and training was a big hurdle for me. she needs to be trained to ambulate herself with a pair of crunches. I planned a new activity for her. To make her practice balance while walking, I got one stand with wheels. I asked her to hold it and push it.   She was really scared. She was is in fear of falling down. It took me 15 days to just make her realize that she will not fall down I started training with this. It was a challenge to make her walk with that stand.  Now she was able to walk 15 meters with a change of direction. I was happy really happy then I suggested for an orthotic consultation .you will be surprised to know that how difficult it is to get a pair of crutches for the tiny child but I am lucky to manage it with colorful creations over the crutches.   I asked her to hold the crutches. My Little Poor girl, she is really scared again. The counseling of the child started with her training with the pair of crutches. This was a really tough job to make a train with four hands. Including all the previous exercises, I started with standing in front of the mirror with the help of forearm crutches. All the Standing and balancing exercises she was doing holding hand was taken over by the crutches. she started enjoying walking. My friend goes slowly, you will fall down. No, she is not listening, she is walking so fast without listening to my instructions it was important for her to follow my instructions to maintain her good posture otherwise in future she would land a postural deformity. My little sweetheart felt as if she got magic in her hand. She went to the mall without her mother’s assistance. She was happy that now she can walk to different places with other tiny children of her classes.

End-stage rehabilitation

A journey which I   was driving seems to be near. Eight months was over new exercises was needed to be added. I started with the following exercises. All the mat exercises with 1 kg of weight, abdominal crunches, Planck’s, Quadruped exercises, standing on single Leg, squatting, hitting broomstick, walking without crutches on the sideways of the wall, one hand support ramp walking, one hand support stair climbing, crossing sticks with unilateral support on the floor.

the above exercise protocol followed for 2 months for 3 days for weak. My tiny angel was more confident in walking and balancing herself. she was doing extremely well and the journey is going to end very soon. The journey with a child with the spine bifid was extremely beautiful ….full of emotions, courage time to time parents counseling and more ever my confidence and dedication were the keys to our journey.