Hydrocephalus: Rooting for Roona

Hydrocephalus: Rooting for Roona

Something that many with Hydrocephalus cannot believe, and rightly so is, how few people know about it. Some have never heard of it and, even in the medical profession, this is the case. I have found myself in many situations where I’ve had to simplify an explanation for someone else, because they simply don’t know what it is, or how it affects those diagnosed with it.  

Rooting for Roona is currently playing on Netflix, if you haven’t seen it yet, I suggest you watch it. I had seen photos of Roona before. It breaks your heart to think of a child enduring a life like that. I will be honest, I hadn’t actively followed her story, nor was I aware of the ending…until today. Photos like those of Roona, aren’t what the world likes to see but, for the Hydrocephalus community, it’s something people need to see. Hydrocephalus Awareness Matters and people need to know about it for one reason and one reason only – it does not discriminate. This isn’t a condition where you can say; “Oh, it only happens in India, Africa or Asia”. 

Most things in life that we humans tend to shy away from, the things we don’t talk about and play down or drown out with “positivity”, are usually what will make a difference in this world. Yet, that’s not reality. You want to hear the good stories, not focus on the “negative” and most times, there either has to be a happy ending, or it falls into the category of a deeper meaning. I’d like to think Roona’s story, being highlighted, falls into the latter. 

Roona is not the only child who will have suffered ill-fate, due to conditions, beyond her parents’ control. There are many children diagnosed with Hydrocephalus (just like her), who eventually die, because of this very reason. As mentioned in the documentary, Roona’s journey ends because she developed breathing problems. I know, many will argue that it wasn’t Hydrocephalus that caused her untimely death. As if that has any relevance at all… 

What also saddens me, is that there are so many parents who join the Hydrocephalus support groups asking the question; “I am x months pregnant and my baby has just been diagnosed with Hydrocephalus. Doctors have advised we should terminate the pregnancy. I’m not sure what to do…Please help me. What does the future look like for my child?” (or similar). This situation is undoubtedly a nightmare for any parent. As a mother, my heart goes out to them. Most of the responses to this question is, for parents to not give up on their child because there are those of us, born with Hydrocephalus, who have survived centuries – against the odds.

I for one would not be able to respond to a parent in this situation because I don’t believe there is a right or wrong answer, only an extremely difficult decision, which requires emotional work regardless of what you decide. Now, and for the rest of your child’s life. You weigh up the options based on what others have said and take it into consideration but ultimately, you are the one who has to live with that decision. 

Just recently I read a heart wrenching tribute by a mother who had lost her 11-year old son. She said (in hindsight), he was trying to tell her but she never thought much of it when he said; “I’m done. This is my limit”. (Many of us reach this point at some stage so, I can empathise with her son). And, who can forget about 8-year old Vincent Barker. These are only some of the stories where young children, with Hydrocephalus, have lost their lives…

In countries where conditions are clearly “better” than in India, where Roona’s family live, even Asia or Africa, it would be harder to provide a positive outlook for these parents. This is purely based on the limited resources and access these families have to “good” health care. I wrote before about a little boy who was unable to get the surgery he needed, because he had developed a bed sore on his head, which needed to heal first. However, his parents couldn’t afford to get him the ointment and supplies he needed, some of which I listed with other costs they needed to cover. This post painted a different picture all together…

Time is of the essence for a newborn baby as their skull has not yet fused and, like in Roona’s case, their head just continues to grow due to the build-up of cerebrospinal fluid (CSF) – without surgical intervention. I know that there are cases where doctors have decided not to intervene surgically, why that is exactly, I’m not equipped to say. Our condition might be the same but there are quite a number of factors, which sets us apart, in terms of the ultimate treatment we receive. 

The picture of Roona’s head at the start, hopefully gives you a visual image of what happens when the CSF builds up, and the kind of pressure it causes. As an adult, or even a young child, there’s no room for that fluid to go. The pain it causes as it pushes against your brain, is excruciating and can be very debilitating, even life-threatening if left untreated.  

This is a very touching and real account of life with Hydrocephalus. I hope Roona’s story reaches far and wide and hopefully, the rest of the world sees the impact this condition has. It’s not pleasant to watch, but as I sat there, literally rooting for Roona, I shed a few tears for this little girl.  

It’s more of a need to watch than a want, as you never know when this condition could affect either someone close to you (or you) too. 

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