We have recently spoken to parents who tell us that they live in fear of a shunt complication.  They want to know how they will know, what to look out for and how did you feel.  Whilst we can’t give medical advice this series is first person live-experience account of managing a shunt complication. 

This week I got to hear from Lou and her experience of shunt malfunctions with her beautiful girl Nell.

Nell was born at 28 weeks and 5 days, and she came into the world via an emergency c-section. She weighed a tiny 1 lb. 14oz. When she was having her newborn checks, they discovered she had diaphragmatic hernia. This diagnosis meant that her organs, that should be in her abdomen (liver, intestines, and stomach), moved through a hole in her diaphragm and worked upwards into her chest, essentially flattening her lung. She was taken to hospital to have an operation to fix the hernia and that surgery was successful. Unfortunately, she had experienced a significant brain bleed, a Grade 4 to the right side and a grade three on the left side. These brain bleeds are the reason that she developed hydrocephalus and consequently had a shunt fitted two months later. She was in hospital the first four months of her life and then we finally got to bring her home to be with the rest of the family….best day ever

Have you experienced a shunt malfunction with your child?

Yes, my daughter has had 11 shunt malfunctions in her four years of being in this world.

How did this experience make you feel?

I don’t think words can describe it, but I was scared, lost, an emotional wreck, sick. The first time is the worst as you have no idea what to do not knowing who to call and where to turn. I felt useless as a mother because I couldn’t fix what was happening. I was trying to stay strong for her.  Her brother and sister were affected too as I was bawling my eyes out and scared that I was going to lose her.

How did you feel before the malfunction?

I’m always on tenterhooks with her. When she was a baby, every day was a nightmare just waiting for something to happen. It was awful. I missed enjoying her as a baby because I was so worried about what was going to happen next. You kind of have a feeling when she’s not right, that her shunt is failing. Can’t really describe it – it just isn’t a good feeling.

How well do you feel you were understood by ED doctors/ nurses?

This is the worst bit for me having to go through the painful stages of going to A&E. We sit in a bright, noisy waiting room which is the worst thing for Nell. Then I’m sitting there counting every minute that has passed thinking is this causing her permanent brain damage? Then I have to go through her whole history, which I have shared countless times before. Sometimes they haven’t got a clue about hydrocephalus which is scary as a parent, that you cannot put your trust in those there to look after your child.  Then she needs a CT/MRI scan which is heartbreaking as she hates it, and because of this it is very difficult to get a scan. The neurosurgical team won’t continue to treat for a shunt malfunction if we don’t have a scan. Meanwhile another hour or two has gone by which sees me worrying more about potential brain damage.

Does your child have any specific signs or symptoms of malfunction?

Nell becomes very lethargic and will not wake up. Sleeps continuously and when she is awake, she will projectile vomit. She is also very sensitive to light.

Would you do anything differently?

Marry a neurosurgeon!!. I wouldn’t do anything differently other than to trust my instincts more and not worry that I might waste someone’s time if it isn’t a malfunction.

Any tips for being prepared?

I would say every time you go, even if you think that it might not be a malfunction, take a night bag for you and your child because you never know if and when they may need surgery, or to stay in. I take the usual stuff like a toothbrush and toiletries, hairbrush etc. as you never know if you’ll need them. Bring comfy clothes, no one cares what you look like. Bring snacks for you and your child. It’s amazing how hungry they are after surgery. Make sure you have a charger for your phone and anything the kids have like a tablet or Kindle. Oh, and hand cream because your hands are constantly being washed/sanitised.

Have your feelings around malfunction changed since experiencing one as a parent?

Yes, I do feel more confident now in recognising them and dealing with them. I suppose because we have had so many, I know the steps that must be taken and understand the surgery inside out. I have also got to know the Neurosurgeons and the nurses that look after Nell. I can understand if a parent hasn’t experienced this before it can be daunting.

Any advice for other parents feeling anxious/ worried for a malfunction?

Trust your instincts. You know your child more than any doctor or neurosurgeon. If this is not normal for your child, then tell them this is out of character. It’s OK to cry, it’s not weak or letting your child down. You will be a big bundle of emotions and sometimes it’s the only way to get through it all.

Do you feel prepared enough to identify when your child may need medical attention?

Yes. 100%. However, now she is in a school setting and I’m back at work, I am having to put my trust in someone else to recognise the signs and symptoms. Now that’s a whole different kind of worry.

If yes – what has helped?

I made sure everyone in my family read about hydrocephalus from the information we got from Shine (charity). They all know the signs of a malfunction, who to call, her shunt type and manufacturer, and the neurosurgeon she is under. We have a poster displayed on the fridge at home also (you can download a template here).

Talking to friends and anyone who wants to learn about hydrocephalus. It’s amazing how many people do not know about this condition. When they start a nursery or school setting, have a meeting with the teacher to make sure they know the condition. It’s been a very trying time explaining it as other than having hydrocephalus she is a “normal” little girl. This can make it difficult for people to understand the issue and worries you have.

Thank you, Lou, for sharing your story with us, it really is appreciated. If you would like to share your experience with us, please get in touch!