Hydrocephalus Voice : How do you know that your baby is unwell?

baby
A question you will be able to answer…in time.

It’s not going to be easy to get to that point but get there you will. I also know that it’s not easy seeing your child in agony or pain. I wish that on no parent, however, it might just be the only way for you to get to grips with what your little one is going through. The day you were told your baby has Hydrocephalus, was the day a deeper bond was formed…cast in stone forevermore. I’m willing to bet, it was a day you pledged to fight just as hard as they would have to, from that point going forward.

Your baby, as innocent and fragile as they are at this moment in time will be totally dependent on you from this point on. However, there will come a time when they can fend for themselves and walk this journey mostly on their own. Until then…thank God they have you.

Your fears and concerns are justified. Being unsure of yourself is like starting anything new until you become so accustomed to doing it, you can do it with your eyes closed. When the pressure inside their little heads builds up, they will become cranky…not like a normal cranky baby but just an elevated version of one. Their little bodies are in pain and discomfort and, the only way they know how to communicate with you, is by crying. This in itself can be a stressful time for you and simply because you don’t have any idea (yet) what to do to help them. You don’t know if it’s their Hydrocephalus or something else…

The one major and outward sign is the size of their head. Because their skull has not fused yet, there’s room for growth. The pressure build up of fluid, pushes the skull outward, causing them to literally get a big head. I imagine that this is (a bit) better than someone who is already grown and has no room for their head to grow. I’m not saying it makes it less painful so please don’t misunderstand.

It might not even be all that noticeable to you after a while, especially since you spend every day with them. Any outsider who sees them from time to time, will notice it immediately. Imagine when you haven’t seen someone for a long time and then after seeing them again, you immediately pick up on some subtle changes, be it some more grey hair, weight loss/gain, etc.

Added to their crankiness, they will start vomiting and this is usually a sign that something more serious is wrong. It does not require pain or nausea medication, it requires a visit to the hospital. There may even be a sign when you look at their eyes. This is the best description I’ve gotten from one of the Hydro moms I know, just before her baby was taken to hospital and endured a series of operations:

“Tadhgs eyes were locked into a sunsetting position towards the end. Prior to that he’d had a sunsetting gaze but not locked..Basically if you think about a picture where the sun is going down and you only see half of that, that’s sunsetting. The pupils and iris are forced down due to the pressure. The child has a surprised look and you see a lot of white at the top of the eye.”

These signs are not to be ignored. It will become second nature to you in time and at first sight, you will know exactly what to do.

Most importantly, trust your gut…if it feels as if something is wrong – it probably is. Besides, I always say “I’d rather be the boy who cried wolf than care about being wrong“.
Your baby is different. This is a fact that you need to accept, however, they can be as normal as any other child. Also, never compare your child to another with Hydrocephalus. We are not all the same. Our limitations are different and that’s OK. They just need extra care and attention. You have an important role to play in their lives…the role of advocate. Be their voice and be their source of strength. They need you just as much as you need them to stay alive.

This blog segment is for the benefit of parents who have children with Hydrocephalus. I am not a medical expert but I am embarking on a journey to make a difference.  And, therefore welcome any comments from parents who have already gone through these experiences. Please feel free to share what you have been through…Your comment might just save a little life…

Thank you for taking the time to read.

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Hydrocephalus Voice: Some scary situations are better faced with someone else walking the journey alongside you.

  
The arrival of a new baby, a new member of your family, is one of the most exciting times in a new mother/father’s life.  
I remember when I was pregnant. There was one constant prayer for each one of my children from the time of knowing of their existence. I wanted nothing more than for them to be healthy, have all ten toes and all ten fingers. Nothing else mattered more to me than that. I did everything I had to, from my side to ensure they were healthy. I ate the right foods, drank my folic acid and had my regular checkups at the Gynaecologist to check that they were developing as was expected.
I don’t think any mother, in the same position, would want anything less for their unborn child.  
This is probably the reason why being told that your child has a condition like Hydrocephalus cannot be an easy thing to hear. Even more unbearable, would be to hear that your precious little newborn will need brain surgery to treat (not cure) this heartless condition. Being an adult diagnosed with Hydrocephalus, it wasn’t easily digested by me so I’m safely basing it on that.

The one thing I do have to say to anyone who has just had this news delivered to them “Stop for a minute…breathe and take comfort in knowing you are not alone. I know it’s a scary time, a time when you probably have a myriad of questions racing through your head…breathe“.

The good news for parents, is that there are others who have gone through this “successfully“. You have a wealth of resources available to you. The aim of my starting this blog segment is to draw on the experiences of others so that you can have a place to go to, to find some of the help/answers you need. You will not be the first to ask the questions you have floating around in your head. The feelings you have, though unique to you, are all normal and part of the process.  

I will be posting regular updates on the research I’ll be doing, based on the experiences of other parents like yourself.  This is part of an idea I had posted about some time ago, with the aim to Give a voice to the vulnerable Hydro warriors among us and provide help/support to the parents who love and care for them.

I hope you find the answers you are looking for and that I can help provide a little shred of comfort or hope along the journey.

Here…take my hand and let me walk this journey with you…I might not have all the answers but I do promise to provide a level of sanity should you need it.

Thank you for taking the time to read.

Feel free to leave a comment, share this post and connect with me via any of the following:

E-mail: skyewater33@gmail.com

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Favourite me at Smashwords