Ayla’s Story

Ayla has unexplained epilepsy. She had her first seizure around 8 months and has been on medication since she was 10 months old. With her current meds her seizures are controlled, and she’s only had a handful of seizures this year.

Ayla had her first MRI when she was 10 months old. I was a wreck leading up to it. One of the benefits of gentle parenting that I had been following with Kyle (as far as possible) was that I was used to telling my kids as much of the truth as was relevant to their age. Gentle parenting also purports that babies know and understand more than society gives them credit for, and that treating them as whole people from birth is important.

So even at 10 months, I spoke to Ayla as if she understood everything that I was saying. I talked her through the process (as much as I knew at the time), and for every subsequent MRI, I’ve talked her through the whole process from start to finish.

Generally children under a certain age are put under general anaesthetic for the procedure. I want to say it’s 10 years old, but it could be younger or older.

Our process is like this:

We need to arrive at the hospital at about 6am and check in. Warn an older kid that there’s going to be quite a bit of waiting around and getting paperwork done. Then we go up to the children’s ward and meet the nurses you’ll be spending the day with. I’m usually talking to the other moms and stuff as well, but that’s just me.

Scheduled MRIs are usually organised from youngest to oldest. At 9 and 16 months Ayla was first; at 4,5years she was 5th. We’re usually in the waiting room before 10am

When they’re ready for your child to go for the MRI, they’ll change them into a hospital gown. They can have a blanket or soft toy (no metal at all). Take something with that they’re familiar with and that will bring them comfort when they first come to, as it’s very disorienting for them.

You’ll go with your child to the room where the anaesthetist will put a mask on them, and either ask them to count or sing a song depending on their age. If you’ve used a nebuliser at home, you can explain that it’s like that mask that the anaesthetist will use.

Usually you hold your child while they put them under. A warning that they sometimes babble strangely, fight the mask quite violently or cry as they go under and it’s a bit of a freaky feeling feeling them go limp in your arms. You’ll then put them on the bed and the staff will ask you to leave.

This is the worst part. I’d suggest having something that can keep your mind busy without needing too much focus. Games on your phone, colouring books or apps, watching a series or YouTube videos are all relatively good for this waiting period. I found it very difficult to read a book or do any work during this time.

Ayla’s brain scans take about an hour and half from the time I leave until they call me to meet her in the recovery room. You stay with them from when they start waking up in recovery until you go back to the ward.

Usually they sleep for about an hour after and then are a bit groggy for a bit. This is the time that you could maybe read a book or do some work. I guarantee your cortisone levels will be lower than they were during the first wait. But honestly if all you manage is more phone games or YouTube videos give yourself that grace.

Usually once they’ve eaten and passed urine they are allowed to leave the hospital. This part however can feel like the longest time! Screen time for your kid is definitely ok during this period. Bring your chargers!

I explain this whole process to Ayla. I talk about it every day for a few days. I also talk about the not eating the morning of. That is the hardest for Ayla, more so when she was breastfeeding and I was the one carrying her, but as she got older not being able to eat was a big thing. I have to remind her about the lack of food or drink a lot, and there are usually still tears on the morning anyway.

If you are breastfeeding I highly recommend having the other parent or another relative there to carry the child to the room before. Them being able to smell you, you being slightly engorged and tense, just makes for a bit of difficult and emotional morning. My husband would normally come with and hold her before.

The one benefit of breastfeeding is that they are allowed to have breastmilk as soon as they wake up, which was a huge comfort for Ayla in the early processes.

My Script explaining the process to Ayla:

You’re going to get pictures of your brain (or the body part it is), so that the doctors can figure out exactly what’s going on. This is what that day is going to look like:

On Monday we’re going to get your MRI. Remember there’s no food or water when you wake up so that you don’t feel sick after the MRI.

On Monday we’re going to go to the hospital really early. Mommy will have to fill in some paperwork and pay them something, and sometimes that can take some time and it feels boring. I’ll need you to be nice and quiet while we wait please. Then we’re going to go to our ward (the room in the hospital) where we’ll meet your nurses and see where your bed for the day is. Mommy will have to do some more paperwork and the nurses will need to do some checks on you. I don’t think they’ll do anything that will hurt you. There will be some other people that will come and see us and ask you some questions – anaesthetist, doctor etc.

When it’s our turn for the MRI the nurses are going to take us to a room where a special doctor is going to give you a mask to breathe some special air that’s going to make you sleepy. They make you sleep for the MRI because it can be loud in the machine but also because you have to be super still for it work, so for kids it’s best that they’re asleep. While you’re asleep they’ll put the needle in your arm so that they can give you the medicine you need to stay asleep. If they need to do blood tests or anything else, they’ll do that while you’re asleep so it’s not sore for you.

Then you’ll go into the machine and it will take special magnetic pictures of your brain and the doctors will be able to see if anything has changed, and maybe help us understand what’s happening to you. But you won’t remember that because you’ll be asleep with the special medicine (we use the word muthi).

When you wake up Mommy will be there and I’ll stay with you until you’re awake properly. You might feel a bit funny, and even say some funny things when you start to wake up. They’ll take us back to the ward where we’ll eat some food and then when you’ve had a wee you’re allowed to go home. We’ll have to wait for the Doctor (Use your Doctor’s name so that the child gets used to it as well) to let us know you can go, and to tell us what s/he saw on your pictures. Sometimes that part can take a long time, but Mommy will stay with you.

Recommendations and Advice from our service providers.

Our anaesthetist commended us on how we spoke to Ayla about what is happening, as she said she was the calmest and easiest child to manage the process with. She’s had parents who told children stories of going to Candyland or meeting unicorns in their dreams etc, and then they wake up and are immensely disappointed and angry that they didn’t see that. In general kids won’t remember anything from the time they are under, so it’s best not to even suggest they will.

The other issue she’s had is parents not warning the child at all about what will happen, and then they fight the mask and need to be forcibly restrained to get the meds into them, which also makes it very traumatic for them.

The more prepared a child is, the better the chances of a calm and uncomplicated experience.

Our neurologist also talked about assuring the child that the MRI won’t hurt them, but also preparing them for the other checks and tests.

Our paediatric nurses recommended that if your child ever needs a line put in for a drip and the emergency room staff are struggling, to stop them and have them call a paediatric nurse to come and do it. They were horrified at Ayla’s first one, and she needed 3 adults to hold her down to get it in at 10 months.

Don’t feel bad about asking any nurse, doctor or service provider to explain exactly what they’re going to do before doing it, and allow your child to ask any questions they want to ask. The more information and preparation the child has, the less stressful it’s going to be for everyone involved.

A note on Covid Tests (or other pre-admission tests)

If you need to have a swab test done for Covid, try and go to a drive through facility if they are available. Having the child restrained in the car seat helps a lot. I generally go first, so that they can see exactly what happens and they’re prepared.

If you need to have blood tests, go prepared to hold yourself together as your child screams. It’s difficult and horrible, but just keep reiterating that it needs to be done, and that if they stay still it will go quicker. Feel free to ask the staff to take a break for your child to catch their breath, so ask all the questions they need to etc. The calmer you’re able to be for everything the better.

Self Care for Hospital Moms

In preparing for the day – give yourself grace and don’t be hard on yourself. You are perfectly entitled to be petrified. It’s an incredibly scary thing to have to take a child to hospital and see them go under general anaesthetic when they’re little. You are likely to have heightened cortisol levels and will be a little jumpy leading up to the day. Ask family around you to help as much as possible.

Don’t plan for anything else that day, chances are you could be at the hospital for most of the day. Get help with fetching and carrying other kids or family members. Arrange for someone to help out if need be.

Get take aways or pre-prepare a meal for that night in advance. Assume you won’t feel like cooking that night, and that’s perfectly ok.

Try and get as much sleep the night before as you can, and try to go bed early the night after. If you’re able to take an extra day off the day after the procedure, I would highly recommend that. An adrenalin crash can be very hard for some of us.

Prepare the rest of the family that you and the child going to hospital are likely to be grumpy and need some alone time when you get back from the hospital.

Plan some alone time for you to be able to let your emotions out – whether that’s a long bath to cry in, or some time to watch the TV shows that let you release your tears, or a long walk outside in nature to let you regulate your system again. Try to plan this time for as soon after the day as you can.

If you need more support or would like to message me directly, feel free to email me on [email protected]