Perspective

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Our days are now filled with mundane things. Parker is in 1st grade at a public elementary. Her school days are packed with reading, math, science, art and other essential curriculum. When I ask her what was her favorite part of the day, invariably, she says recess.
Life is good

It is easy to forget things would be completely different depending on where we live. I take for granted that in the Western World, a fetal diagnosis means you are watched by a High Risk OB, and your child will have a Neurosurgery consult at birth or before.
Parker received her shunt the day after she was born. It can be scary for some to think that their infant will have brain surgery. I believe it is a blessing. It is truly a life saver.

What would our lives look like 8,500 miles across the world?

Meet two year old Roona Begum from Tripura, India. Like Parker, she was born with congenital Hydrocephalus which caused spinal fluid to accumulate to such a degree that in by the time she was a year old her skull had swelled to 94 cm when the average size is 46 cm. The compression on her brain was immense and heartbreaking.
Roona 1
Roona 2

Her parents Fatima and Abdul were desperate for help however coming from a very poor rural part of India, they didn’t know what could be done.
Through the help of two Norwegian students who started an online campaign to raise awareness and funds for Roona, a charity stepped in and raised significant the money for Roona to travel to Delhi to be seen by a leading Fortis Hospital Neurosurgeon Dr Sandeep Vaishya and for surgery.

On the first meeting Dr Vaishya didn’t know if Roona would survive as her Hydrocephalus was so severe. However he decided that emergency treatment was necessary.

Roona subsequently underwent five surgeries over the course of a few months to drain excess fluid from her head and reduce the size of her skull. She spent 105 days at the Fortis Hospital before being discharged.

Meet Roona AFTER SURGERY

Roona is now three and she is doing well. She is now smiling and even starting to laugh. She can hold her head straight and she can move her head from side to side on her own.
Roona 3
Roona 4

Her Neurosurgeon who has recently assessed Roona again has been surprised by the extent of her recovery. He says he sees a lot of improvement which he didn’t expect. She has gained weight and her activities have improved a lot.

Her parents are delighted and say they never expected their daughter to survive but now they have hope and are thankful to the doctors and all the people who raised funds to support them.

Roona is miraculous. She is a beautiful snowflake in our Hydrocephalus family.

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2 responses »

  1. I saw the July 25, 2016 TLC documentary “My baby’s head keeps growing” and have it recorded on my DVR. I pray for the entire Hydrocephalus community worldwide. May they find a cure shortly so no more children have to suffer from this deadly and painful condition. God bless. 💜🌸💜
    PS: I too have a VP shunt (June 2003, revised July 2003). I suffer from Arnold Chiari Malformation and Syringomyelia ( in addition to a long list of related chronic and painful conditions). My syrinx runs from C2- C5. Together we can raise awareness until a cure is found.

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