The challenge of becoming a mum with epilepsy
#SafeMumSafeBaby
Lyndsey, 26, describes the impact that her epilepsy has had on her and her little boy, Caelan, and explains why she and her partner have opted for genetic screening before having a second baby by IVF.
My name is Lyndsey. I am 26 years old and I have now had epilepsy for 18 years. It began when I was eight after a nocturnal seizure whilst abroad on holiday.
In most cases, epilepsy could be recognised as a hidden disability, living with the condition is something you can either choose to disclose or keep private. Only now, at the age of 26, have I decided to speak more openly about my seizures, and this comes from being a mother to a child who unfortunately also has epilepsy.
Tuberous Sclerosis Complex
If dealing with the fear and worry that epilepsy can bring wasn’t difficult enough, at 18 I was diagnosed with a neurological condition called Tuberous Sclerosis Complex (TSC), after an MRI scan.
TSC is hereditary or can result from a spontaneous genetic mutation, which was the case in my situation. The condition means I have tubers in my brain causing epilepsy, and they can develop benign tumours in different parts of the body. For some unknown reason, this was never picked up on any previous MRI scans meaning for 10 years I lived with unexplained epilepsy.
Worries around carbamazepine
At the age of 21, I fell pregnant with my little boy, Caelan. Carbamazepine was the AED I was taking at the time and as you can imagine this was a bit of a worry with there not being enough evidence of it being ‘safe’ for the baby and the potential to cause abnormalities in our unborn child.
Evidently, no epilepsy drug is 100% safe for an unborn baby and what works for some, doesn’t for others. Once the fetus has formed consultants don’t recommend any alterations to AED medication, unless necessary. First and foremost the health of a mother is the most important factor and as heart-breaking as that may sound at first, the baby needs a mother who is physically well to prevent any harm or loss.
Becoming a mum in general comes with a whole lot of stress and concern. Of course the other thoughts you want to have as a parent are the excitement and joy that this baby will bring.
Status epilepticus
Unexpectedly, at 39 weeks pregnant, a week before my due date, I had a prolonged seizure, also known as status epilepticus. Status epilepticus is when a seizure lasts more than five minutes or they occur one after another and then become a medical emergency when you don't regain consciousness.
The seizure occurred whilst I was asleep in bed. Luckily, my partner was there to be able to call 999 and I was rushed into hospital for medical intervention. With having seizures, you become very unaware of where you are, why you are there and what has just happened.
When I regained consciousness, it was all very surreal being surrounded by doctors and nurses with my pyjamas on and everyone asking me ‘how I feel'. The confusion then led me to believe I had had my little boy.
Worry about SUDEP
Obviously, after this experience I started to worry about the possibility of SUDEP (Sudden Unexpected Death in Epilepsy), I became anxious to be left alone and frightened for the baby. A week later he was born safely and very much loved, instantly.
The guilt
At just six months old, Caelan unfortunately had an infantile spasm and after an MRI scan and an EEG, he was diagnosed with Tuberous Sclerosis Complex. Further investigations are still ongoing today. He was referred to the child’s paediatric unit and his consultant prescribed him vigabatrin, a drug which can cause loss to peripheral vision - “Another thing, when will this end?”
Watching your child experience these episodes right in front of your eyes is heart-breaking and that’s when the guilt kicks.
At two years old, Caelan started to experience what appeared more like seizures and he is now taking lamotrigine to control them. He also has developmental delay and the thought of having another baby naturally is too much of a risk. The mental turmoil all these factors have caused isn’t something I wish to be continued.
Genetic screening
Four year later, we are now trying for another baby by using the Preimplantation Genetic Diagnosis route (PGD) which involves testing the embryos for any genetic disorders before we head into our journey towards an IVF baby.
Hopefully, if we are successful there will be less of a worry about the implications Tuberous Sclerosis Complex can have on the baby we are so desperately hoping for.
Thank you for taking the time to read my story and please remember, no-one has the right to judge your choices, whatever that may be.
More information
Find out more about our Safe Mum, Safe Baby campaign.
A report from the Commission on Human Medicines has shown that some of the most commonly prescribed epilepsy medications including carbamazepine, topiramate, zonisamide and phenytoin, pose an increased risk of harm to any baby exposed to them during pregnancy.
It is well established that valproate carries a high risk during pregnancy and should never be prescribed to girls and women of child bearing age unless they are part of a birth control programme.
Lamotrigine and levetiracetam are the safest drugs to take during pregnancy.
It is important that no woman should stop taking her medication without consulting her doctor. All girls and women of childbearing age should be called in for a review with their doctor so they can discuss their treatment options and ensure that they are on the safest possible medication for them.
Any woman who is planning a baby, should be referred to her neurologist.
Letter of support for a review with your GP
Our Medical Director, Professor Ley Sander, has written the following letter to support all women in requesting a review with their doctor.
Download a pdf of the letter here.
More stories
Read about the challenges other women with epilepsy face when thinking about starting a family.