September Warrior – Maia

I’d like to introduce you to my beautiful Maia. She is my much longed for 3rd baby (although she has recently also become a big sister herself!). She was born at 39 weeks by elective c-section and it was a lovely, complication free birth. From day 1 she was such a content, happy little girl and everyone who met her loved her.

At 5 months old, I noticed her doing some strange ‘jack-knife’ type movements on waking from her nap. I thought this was strange and took her to the doctor, who told me that she may have a bit of a virus and a tummy ache, and to monitor her. A few days later, I realised she wasn’t really smiling at me or making eye contact and this worried me a lot, along with the strange movements that were still happening. I took her back to the GP, armed with a few videos that I had managed to catch of these episodes, and as it happened, she woke from a nap as we went into the doctor’s office and had a cluster in front of her. The doctor immediately said that she thought that this could be Infantile Spasms and put a call in to the Paediatric Ward at the Royal United Hospital in Bath. We were on the ward half an hour later, where we had an EEG within the next 2 hours. The doctors confirmed that night that it was indeed Infantile Spasms and the hypsarrhythmia pattern was present on her EEG.

I just switched to autopilot at that moment. I don’t think I fully registered what was happening when this team of doctors started their sentence with “I am very sorry….’

I was calm on the outside but couldn’t accept what they were saying, that she may never walk or talk or develop. It has actually taken a course of Cognitive Therapy to fully realise what we have been through as a family. I highly recommend this therapy as a way to come to terms with this diagnosis – don’t underestimate the effect it can have on you and your family. We moved house very quickly after her diagnosis to be close to family support so our whole lives changed and my older 2 children moved schools. It was a lot to cope with.

Maia was started on prednisolone that very evening. Although I knew that it was necessary, it was incredibly hard watching her go through the harsh steroid treatment. She ballooned in weight, didn’t sleep for more than 15 minutes at a time and was ravenous as well as being immune compromised. I breastfed her throughout and still don’t know how we kept going. We did have to add in some solid food just to stave off the hunger for her. Basically, whatever is going to get you through that 6-8 weeks – do it. Whatever makes it easier. The hardest part of the steroid treatment as a parent is your baby not smiling at all. She also was pretty unresponsive to any pain. It was heartbreaking. The first time we saw a smile on the wean, I cried my heart out. It was like she had come back to me and she was still very much in there.

Maia relapsed during the steroid treatment and we had to add in the drug vigabatrin (Sabril). This made her quite floppy, she lost her tone with this drug but I would do it 10 times over if needed as it worked along with the steroid to get control of the spasms. Be aware that with vigabatrin, a baby’s suck and swallow can become weak, so it is important to watch out for signs of aspiration. As she adjusted to the dosage though, her strength came back.

We started to finally see some signs of progression again, and it was so hard to enjoy them for fear of it all happening again. When our wonderful neurologist decided to wean the vigabatrin after just 3 months (on a slow 10 week wean), I was apprehensive, but we did it and with each drop in dosage she did something new.

We decided to pursue genetic testing to see if we could find a reason. We had already gone through the MRI scan and CGH microarray which were both clear and I needed answers. After 1 year her epilepsy gene panel was also found to be all clear and we are now part of the 100,000 genome project. We have been told not to expect them to find the cause though. But if they do and if it will help another family somewhere down the line then I would most definitely like to go for it.

As big part of our journey with IS, a positive part has been being involved with the set-up of UKIST. I am very proud to be on the board of Trustees and being part of the team has been very therapeutic (though I am currently on maternity leave after having my 4th baby!)

Maia is now 4 years old and is starting school! I’m happy to say (and I know how lucky we are) that she has no lasting effects from her journey with IS. We will will always be watchful, as I know any other IS parent would be. But we celebrate her every day. She’s funny, kind, cheeky and happy and for that I’m thankful every day ❤️