When you know your baby may have behavioural issues due to a brain issue

[Wordup19]

I'm not really sure what I'm after with this post, maybe a bit of a hand hold. My baby is 4mo and required an operation shortly after birth due to a brain issue. Her hydrocephalus may or may not result in physical and/or behavioural problems when she's older. So far all has been well, but I can't help thinking we have a ticking time bomb for want of a better phrase. I want to embrace the moment and enjoy her as a baby but often I find myself wondering if this is the easy part and things will get harder for my LO and us as parents as times go on. Alternatively she may have minor issues, we just don't know the impact, we have to wait for her to show us. The uncertainty causes me so much anxiety and I know I will regret worrying. Has anyone else been through this kind of feeling / experience?

Not personally with my own children, but I work with families who do.

It is a very natural feeling.
All parents worry about what the future holds to some extent, but when your dc has and additional need, then that becomes massively magnified.
Most parents are helped to find they are not alone - there are some wonderful support groups out there, such as Shine (and I'm sure others, with a quick internet search).

Have you been referred to any Portage, or otherwise named support at home from your local authority ? If not, ask either your HV or your dd's specialist about it.

Thanks for your response. Not heard of portage but just looked up for my local area. I am wondering if our HV hasn't referred as we are in theory waiting for a potential SEN to emerge. We are in contact with Shine who were helpful at the point of diagnosis in terms of supporting us getting our heads around things, but tbh the big book we recieved from them on your child and hydrocephalus sowed even more worry as it pretty much goes your child may have... followed by a huge list of potential physical and behavioural problems.

I understand. My 8 year old has ventriculomegaly and some other brain abnormalities, one of which has been associated with schizophrenia. I also have a 13 year old who has ehlers danlos syndrome and is also showing symptoms of ASD which both increase the risk of mental health issues. I worry about the future for both of them. We had an amazing year in 2019 when my 8 year old was medically stable and my 13 year old was emotionally stable. We just crammed in as many fun things as we could, just in case it wouldn't last. Then covid happened and my 13 year old attempted suicide. I'm scared it's all downhill from now on and we are back to trying to do as many fun things as possible.

Sorry, that was a bit of a brain dump and has been more worrying than reassuring for you but just wanted to say that you are not alone.

Thank you for your response. It is reassuring that others are in my position, but of course I would not wish the situation on anyone. I hope you have another very happy year. May I ask when your 8 year old started showing any symptoms /behaviours relating to the ventriculomegaly?

He was delayed from birth really. Born at 35 weeks but he was 4 weeks old before he was ready to come home. Even then he wasn't very alert at all and he was 7 months old when he first smiled and 16 months when he first sat up without support. I noticed his delays more when his little brother was born. There is a 12 month gap between them and my youngest was much more alert than my 8 year old right from the beginning.

DS2 has hydrocephalus due to prematurity and had a shunt fitted at 9 months. He’s now almost 12 and has never had a revision just regular eye checks and neurosurgery checks.

It may sound scary but he has dyslexia, and probably autism, but that may have nothing to do with the hydrocephalus as his sister also has autism. DS2 has the biggest personality - adults and children like him as he’s funny and interesting. He has struggles but he also has huge positives that mean he’ll make himself happy as well as the people around him.

I worried about him a lot, but you are watching a whole person growing into the world. My NT children have their ups and downs, so does DS.

I don’t think there’s anything I can say that will stop you worrying, but I just tried to think, we’ll cross that bridge when we come to it, and really all enjoy the little wind and steps forward.

Enjoy the wind 😁 I meant enjoy the little wins

@Anselve thanks for posting. You are right I should focus on the little wins. My LO had a shunt fitted at 8 weeks, no issues so far touch wood. Everything she does is a little victory. I'm just so worried about regression or longer term issues it can cast a shadow.

It is a shadow, you’re right. But you’ll get through it. Lots of children with shunts have no problems and fingers crossed your DD is one of those.

DS2 reckons he’s part cyborg. Once he had to have his heart checked and had all these wires stuck to his chest. His face was an absolute picture - just like wolverine!

@Anselve I like to think my LO is a bionic baby! I'll be getting her a shunt Teddy bear when she starts asking questions. Children always see the joy in the strangest of situations like your little wolverine. Thanks for giving me a boost. Some days the worry really does take over and I feel completely alone with it. None of my other mum friends really understand.

One of my best friends had a shunt fitted for the same reason when he was a baby. He is a perfectly NT and happy adult. Just got married and has a baby on the way with his wife. He is physically quite clumsy but not in a diagnosable sense. Just wanted to offer another perspective

@Foreverbaffled thank you so much. I really really hope my LO has this outcome but at the same time I feel like I need to prepare for a not so good outcome.

[quote Wordup19]@Foreverbaffled thank you so much. I really really hope my LO has this outcome but at the same time I feel like I need to prepare for a not so good outcome.[/quote]
Of course. That sounds very sensible and rational. Your little one sounds lovely whatever the outcome x

Hi, there have always been uncertainties over my son's development, for different reasons, but still a similar experience of worrying what the future will hold for him. I would say that over the last 6 years those feelings have ebbed and flowed, somewhat like grieving - grief for the life he could/should have had and for the parenting experience I thought I would have. But those feeling subside and the joy of parenting my wonderful boy and celebrating the things he does achieve takes over. Not to say the worries and grief don't come back, but I deal with them and then we move on.

Having friends with children with AN has been really important for me. They understand that blue feeling when it comes and don't try to talk me out of it with uninformed reassurances. And we celebrate together the wins that we know some of our other friends just wouldn't understand, like when our children finally do something that they just took for granted with their kids.