One Step at a Time as a Mom With Epilepsy
Last updated: January 2023
I was diagnosed with epilepsy at 19 and in an instant my life changed. Simple things like birth control, etc., now had to be a thoroughly thought-out process. So when the time came that we wanted to start a family, I visited my neurologist on 2 occasions for the "all clear" and also to find out if the medication that I was using would not affect my baby in any way.
My pregnancy journey
I was told that there was absolutely no way it could affect my baby, and was pushed out the door with a handful of folic acid tablets. As our baby was an IVF baby, all these questions were posed to the professors dealing with our case. Again, I got the "all clear" and was told there's probably no chance this baby could possibly have any effect from my meds. My pregnancy was amazing! As smooth as syrup, I like to say. I took my meds, folic acid, ate all the fruits in the world, and was actually very healthy.
The scan that revealed an issue
When the time came for us to have our 3D scan the doctor held her breath and told us that there seems to be something wrong with one of our baby's legs. The issue was, one leg was shorter than the other; her femur to be exact. Our doctor's response was: "Don't worry it will probably catch up." Looking back now I really how very little knowledge people had about the side effects of medication for pregnancy and babies. We left there and I went in search of an orthopedic surgeon to try and make sense of all this. He explained that my medication was one of the top medications listed to cause birth defects amongst fetuses.
The birth of our daughter and her journey
So when our precious princess Olivia was born, her right leg was already 2.5cm shorter than the other. If left untreated she would have a discrepancy of nearly 20 cm as an adult. As a result, her first surgery was scheduled at the age of 3 where she had a super hip and super knee surgery. Everything on the right side of her body was delayed in development by approximately 7 weeks in comparison to the left side of her body.
This started our journey with Olivia's 22 surgeries in total, and at 14 years old, not yet able to put both feet on the ground due to many many complications.
A mom with epilepsy
As a mom who suffers with epilepsy, the past 15 years have been tough. My seizures are usually brought on by stress and having a child with special needs is nothing short of keeping you in that stressed out zone 24 hours a day. All we have known as a family for the past 14 years have been surgeries, doctors, hospital stays, and loads and loads of trauma on so many levels.
Nothing could have prepared me as a mom for this journey and nothing makes me as angry as doctors not being honest about the trauma they can cause by not being honest with their patients.
A proud mom
I am so proud of my daughter for what she has achieved in her life, but nothing I can say or do can bring back the childhood that she never had. All she has known was that she is different and that adults and children alike will bully her and call her names.
I wish I could tell more moms with epilepsy that motherhood is by far the greatest joy, but that nothing can prepare you when you receive news like this.
Take life one step at a time
For our family, we take one step at a time. I am currently in the process of writing a book with the same title and the purpose of the book is to provide support and encouragement to other parents who receive the same diagnosis. Just remember to take life one step at a time!
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