We went straight to special care where there were doctors all stood around Nyla while she just led all helpless. At that point the doctor told us that she had these seizures and that due to how young she was and how small she was if one of these were prolonged then she may not make it or her body not able to cope with it. To be told after 1 and a half days of your baby being here that there’s a 50/50 chance she may not make it was the most heart breaking thing we have and will probably ever have to deal with, at that moment we just went numb and there was an eerie silence.
So that Monday night we went to our own private room and I was allowed to be around, but we spent the whole night just watching the door waiting for that knock. That knock never came and I went down to see her at 5am and was told she had responded to the drugs and there were no seizures overnight. A small step in the right direction and over the next 5 days Nyla would go through some vigorous testing for a new born, endless bloods taken, a special EEG where they actually put probes under her skin on her head, lumbar puncture, she had 2 cannulas which were having her antiviral and antibiotics pumped though them as well as having oxygen tube and feeding tube in. She also had an mri scan within this period. This was all a lot for us as parents to handle but we had to take it in process it and just be there for our little girl.
At the end of these 5 gruelling days we were told after all the testing and results that had come back that Nyla had suspected Sturge Weber Syndrome. We honestly didn’t have a clue what this condition was and what it consisted of so we were in the complete unknown which was the scariest part. We were then told we were being discharged after a good few days for Nyla…finally we could go home and start family life but we still had it in the back of our head that she potentially had Sturge Weber so we just couldn’t settle properly.
Over the next 7 weeks much to our surprise Nyla had no seizures and we were settling into family life and finally able to enjoy our little princess. She was doing all the baby things and things were looking up.
With Sturge Weber and the seizures that come with this, they can be controlled for a period of time then all of a sudden creep up on you from nowhere. Which leads me to the 20th December 2020.
Her seizures came back in a dramatic way, we had decided to give her a bath as she always liked the bath from early on and was a good way to settle her as she had been grouchy that day. While bathing her it was apparent that she had stopped breathing, we rushed her to the bedroom where we managed to bring her out of this. A few moments later she was doing it again but also going blue in the face. Absolutely horrifying to watch. Instinct kicked in we got her dressed as quick as we possibly could and rushed her to A and E. One of the blessings from all this is we live less than 5 minutes from Frimley Park hospital. Natalie took her in and within seconds if being in there she was doing it again so she was rushed into resuscitation. I wasn’t in there at the time but Natalie describes it as you just see waves of nurses, doctors and consultants flood the area and get to work on Nyla, which is a terrifying thought let alone having to watch it, but we would do anything to be by her side and always will be.
Thankfully they managed to stabilise Nyla and transferred her to the children’s ward where she would have yet more tests, pretty much all the same tests as she had previously including lumbar puncture etc. We knew deep down at this point there was something there to be worried about and it wasn’t going away. They decided at this point to start Nyla on the anti-seizure medications, she had phenobarbital which we were told they were using as an emergency med to break the circuit as Nyla’s seizures were clusters. Also she started having Keppra. We were told she had Sturge Weber syndrome which we kind of knew was coming as we had already started doing our research once we knew it was suspected. But this was a challenging time for all of us including friends and family as we were having all this information thrown at us while trying to process the medication side if things as well as the syndrome itself which is quite complex in terms of symptoms, treatment etc.
Going back to the 25th October when she was born, not once did we think we would be in this position as naturally you expect to have your baby everything be well and go home and live happily ever after.
Over the next few days Nyla would be monitored, but on Tuesday the 22nd of December at around 11.30pm to 8.30am on the 23rd Nyla would have 12 seizures in that period which was hard and scary but at the same time weirdly or not a learning curve for us as in how to spot the signs and try to get to grips in dealing with them. Again she was loaded with more doses of phenobarbital and went a few days seizure free which felt like years to us.
Xmas day we woke up in hospital, not the place we ever expected to be at Christmas. Nyla had loads of presents on the end of her bed which were kindly put there by the staff at Frimley Park which was a real nice touch and we were amazed by their generosity. That morning we had a visit from Nyla’s consultant to say that the mri had come back clear of any clotting and even more to our surprise we were being discharged to spend some of Xmas at home. Amazing but at the same time scary as we didn’t have the emergency button at home or any nurses, doctors or consultants to hand.
We finally made it home with a bag full of a medications and the prospect of not knowing if and when Nyla would have more seizures. From the 25th December 2020 to the 10th January 2021 we were in and out of hospital another 5 times, the 5th Jan being particularly challenging as Nyla had 10 seizures over a short period of time, at this point they added a 2nd seizure medication, it just felt like we were taking 5 steps forward and then 10 steps back all the time. Hospital was becoming our second home.
From the 10th Jan we then had a good run of things up until the 3rd of Feb at which point we noticed some more seizure activity so another night in hospital was needed and the dosage if meds were upped again. The difficulty with SWS especially in babies is finding the right medication but also finding the right balance with dosage and babies weight which is obviously increasing all the time. This can end up being a bit of trial and error which is scary for us as parents as you end up watching and waiting for the errors.
Nyla has had more visits to hospital since the 3rd of February to the point they have changed one of her medications completely and upping dosages if and when they can. The seizure activity is becoming different as she grows but we are also learning all the time and trying to be more confident in dealing with these.
SWS is a complex syndrome that has many different ways of portraying itself and unfortunately no two children are the same I which it then makes it more difficult for families, friends and more importantly medical staff to deal with.
This syndrome needs more awareness, we were clueless as to what it was and I’m pretty sure if you asked the public what it is 99% wouldn’t be able to tell you. But more importantly I think it needs spreading to the medical staff etc as we even had paramedics googling what it was and when I called 999 there was confusion about what it was and how even to spell it. I am not for one second degrading our NHS or the staff as they are amazing and we are very privileged to have such a wonderful health service. I am also not pretending I am some sort of medical expert, but I just feel there isn’t enough knowledge out there about Sturge Weber and there is so much more that can be done to raise awareness.
This isn’t just for us the families that are involved in this now but it’s for future families that have this syndrome thrust upon them. As from my experience so far it can be a scary, emotional roller-coaster that needs so much of your time and energy to adapt to. But there are also good periods which we need to learn to embrace and that’s another part of the learning process.
There are support groups out there and we have already formed a close bond with Sturge Weber UK which is a charity set up to support many aspects of the SWS families. They and the families within this community have been amazing in support us, the advice you gain and knowledge from families that are going through or been through the same as you are the biggest help you can get. They are there to answer any questions or queries you may have 24/7 and not just about SWS directly also with the emotional side of things and just being reassured that in the darkest moments with SWS there is always a flickering light at the end of the tunnel.
We can’t thank them enough for their support already and I am sure we will need a lot more along the way. Their website provides so much information and answers surrounding SWS so don’t hesitate should anyone need anything, go and get in contact with them, they won’t let you down.
We have also set up a Facebook page documenting Nyla’s journey, to help raise awareness of Sturge Weber syndrome. If you search Nyla’s journey in the search tab on Facebook it should appear for you to see.
Together we can make a difference. Knowledge is power.
