The Unexpected Journey
By Sarah Caldwell| Published on March 25, 2021 | 11 Minute Read
In 2014, I was an excited first time mum ready to embrace my new journey of Parent Hood!
When Amelie was born, I was in the new mummy bubble! I couldn’t believe that she was finally here, and I was now on my steep learning curve of being a mum.
Amelie was a very unsettled baby, she didn’t sleep, she couldn’t keep a feed down and to say she would cry the majority of the day isn’t an understatement. For the short periods of time that she did finally sleep, I thought I could still hear her crying even though she wasn’t…
As a new mum, I felt that I was doing something wrong…. Why won’t she settle? Why won’t she sleep? Why can’t I comfort her? Is this ‘normal’? What am I doing wrong?
It turned out that Amelie was dairy intolerant and suffered with reflux, once she was prescribed with a dairy free formula and Gaviscon, she was like a new baby! She would now sleep for 3/4 hours and she was able to keep most of a bottle down now, it felt like a huge relief. Things seemed a little more settled, and I was ready to start being able to enjoy my maternity leave and start venturing out a little more with her.
I went into work to show Amelie off to my team, it was lovely to catch up with everybody after being away for 12 weeks and for them to meet Amelie for the first time.
Little did I know, this was the day where everything was going to change.
It was when I was in the office having a catch up and everybody having a cuddle with Amelie, where she looked like she had turned blue. We rushed outside to get fresh air, and she seemed to look ‘normal’ again. I decided to take her back home and see how she was in the afternoon. It was during her next feed; I could hear a choking noise. The colour was draining from her and she was turning blue again! I was in complete shock; I didn’t know what was happening to her. I sat her upright to see if she was struggling with her feed, and she was still limp, and gasping for breath. In this moment, it felt like I had frozen in time and every second felt like a minute. I rushed outside my house, and by a miracle someone was walking past my house. She could see that I was panicking and didn’t know what to do, she took Amelie from me, and said call an ambulance, your baby looks like she is having a seizure! (Little did I know at the time, the lady was a nurse, I believe someone was looking after us in this moment)
This is where it all began…… hospital visits, tests, referrals to specialists and then finally the Diagnosis.
Amelie was diagnosed with a rare condition called Sebaceous Nevus Syndrome. The birth mark that we originally thought she was born with on her head, in fact was part of this condition as well as a brain abnormality, which was causing her to have focal seizures. She was prescribed medication for her Epilepsy, and I was advised that it could take some time to get into her system, and to start helping her and reducing the number of seizures she was having each day.
As a parent, you go into flight or fight mode! The fear of the unknown. It is a roller coaster of emotions, blaming yourself and trying to find reasons and answers for what has happened. Not allowing yourself a minute to rest or sleep because you want to keep your eye on them 24/7 to make sure they are safe. I was like a walking zombie…
Fast forwarding over the next few months, trialling different epilepsy medications and them still not working…… we then came to our next hurdle.
At 7 months old, Amelie started doing something different, she looked like she was twitching/jerking. Her eyes would jolt upwards, and her arms would do the same, this would continually happen for about a minute, and then it would stop. I just had a gut feeling that something wasn’t right, so I took a video and shared this with her team of doctors. After further tests, Amelie was then diagnosed with West Syndrome – infantile spasms, which was another form of Epilepsy. What I will say is, ALWAYS stick to your mother intuitions, they are there for a reason.
The fear of the unknown. It is a roller coaster of emotions, blaming yourself and trying to find reasons and answers for what has happened. Not allowing yourself a minute to rest or sleep because you want to keep your eye on them 24/7 to make sure they are safe.
Over the next 12/18 months, Amelie went through approx. x8 different medications, all of which weren’t helping her seizures. So, her team of doctors decided to refer Amelie to the Epilepsy Surgery Team, to see whether surgery was a viable option for her. The process took around 6 months, which at the time felt like a lifetime. With more tests and hospital stays and a team/panel of doctors that reviewed Amelie’s Case. It was decided that Amelie needed to have a left temporal lobe resection surgery, to remove the part of the brain that was abnormal and causing the seizures, in the hope that this would then stop her seizures moving forwards.
As her mum this was the hardest decision to make, there were lists of pro’s and con’s for the surgery, but ultimately the decision is left for you to make! You never imagine as a mum, that you would have to make these types of decisions for your child, constant sleepless nights, and your anxiety is through the roof trying to make the right decision. It resulted with us opting for her to have the surgery.
Amelie had the brain surgery at Great Ormand Street in London. We were advised at the time, if she was seizure free for 6 months post-surgery, then the surgery had been successful. So, it felt like a waiting game. During the recovery Amelie was doing amazing, she just took everything in her stride, I was in awe of her and how she dealt with it.
I remember the first time that Amelie looked at me, and I mean REALLY looked at me, into my eyes. Pre-surgery she would look past me or through me. This was literally the best feeling in the world. She started babbling and saying Daddy & Mummy. She would sit down and actually play with toys and get involved in activities and listen at story time. It was the best feeling in the world, and it felt like things were on the up!
It soon came to THE 6-month day, and at this point we hadn’t seen an seizure activity from Amelie since before the surgery.
And then just like that it happened…. She started spasming again! I couldn’t believe it! 6 months of no seizures and then on that exact day they came back. I was heartbroken. After everything she had been through, they had come back. Like any parent in this position, your mind goes into overtime. What does this mean now for her? What options do we have? Medicine didn’t work for her before.
We then faced the decision of what nursery setting was best for Amelie and deciding that a special needs provision was most suitable, it wasn’t an easy decision to make and have to come to terms with. I just wanted everything to be ‘normal’ for Amelie. For her to have the same life as I did growing up. To go to nursery/school, to make friends and to go to Swimming and Dance classes like I did.
I knew that Amelie’s journey was going to be different, and it was what was right for her that mattered.
Just before Amelie turned 4, she then received the diagnosis of Autism (ASD) & Sensory processing disorder (SPD), a couple more to add to the list!
At the time I hated label’s, now I see that without these, she wouldn’t have been able to get the support she needs at school. Amelie attends a special needs school, and she is doing really well.
Even against all the odds and the hurdles that get put in her way! She manages to keep surprising us with the new things that she learns and with a huge smile on her face. She is now able to say over 80 words verbally! The latest being ‘I love you’.
She is one inspiration!
Although this journey is not what I anticipated or expected. It has changed me for the better, it has made me the person that I am today. I am grateful for each and every day. I choose to live in the moment and not think too far into the future. I make sure that I take a positive out of every day no matter how small they may seem.
I want to try and help spread awareness and to educate children & family’s about Inclusion & Diversity. I am in the process of publishing my first children’s book; Amelie & Albie’s Adventures – which is a tale about a little girl with Autism & Epilepsy, sharing the world through her eyes. Seeking for inclusion from her friend Albie the Dragon.