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 the hospital and endured a series of operations:
“Tadhg’s 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…