Astrid’s Journey With Focal Cortical Dysplasia

Astrid was just three days old when she was diagnosed with focal cortical dysplasia. Her family shares their experience of navigating infant epilepsy, surgery, everyday life, and the milestones that mean so much along the way.

Learning about Astrid’s diagnosis of focal cortical dysplasia

Astrid's diagnosis was a shock to all of us. We found out when she was just three days old. After inhaling meconium at birth, she was admitted to the ICU, where doctors noticed she was having convulsions and transferred her for emergency testing.

Our pregnancy had been completely normal, and after testing we were told that her entire right hemisphere was malformed, with some areas of her left hemisphere affected as well.

Learn more about what causes epilepsy 

What were those first weeks like for you and your family?

The entire experience was a nightmare. I had health complications after delivery and had to stay in one hospital while Astrid was transferred to another. We saw very little of her and found it hard to believe what the doctors were telling us.

When we were finally able to hold her at a week old, Astrid was having between 70 and 100 seizures a day. Doctors tried medications and a ketogenic diet, but nothing worked.

At two weeks old, we were presented with the only option to protect her brain and give her a chance of survival: a right functional hemispherectomy. The surgery carried significant risks, but we had no other option.

Before surgery, we took as many photos as we could and treasured every moment with her. She underwent surgery at just three weeks old.

Learn more: Brain surgery for epilepsy

What led to the decision to operate so early?

The seizures were so severe and frequent that Astrid had very little quality of life. She couldn't get through a feed without having a seizure, and medication wasn't helping.

Surgery was the only option to preserve the healthy parts of her brain. Emotionally, we were preparing for the worst, but we knew we had to give her the best chance possible.

How has her treatment journey evolved since the surgery?

Astrid's seizures have continued, but they're far less severe and less frequent. Finding clonazepam has been a real game changer for us. She also has weakness down her left side, which we're treating with physiotherapy. For now, we're focused on helping her develop and enjoying her first years of life.

What milestones has she reached recently that you're proud of?

Astrid has good days and bad days, but overall she has fewer than 10 seizures a day. She's a very happy, smiley toddler who loves swimming, playing with toys, morning walks in the countryside, and watching people eat.

Astrid has become much more social. She recently started laughing and copying our sounds, which has been such a joy to see. Every milestone feels like a miracle. At six months old, she was able to hold her head up, something that was particularly challenging after surgery and because of her hemiparesis.

What do you enjoy doing together as a family?

We love taking Astrid swimming. This summer we took her to the coast and she loved it. We also love being in nature and are looking forward to spending more time in the countryside as she grows.

What kind of support system do you have?

We're lucky to have a fantastic medical team, including her pediatrician, neurologist, neurosurgeons, and a palliative care team who are only a phone call away.

Learn more: How to find doctors who specialize in epilepsy

We're also incredibly fortunate to have supportive friends and family. During Astrid's hospital stay, people helped with transport, meals, shopping, and much-needed breaks. We feel very lucky to have that support around us.

Advice to other parents on a similar journey

Be kind to yourself. You don't have to be strong all the time.

Let yourself enjoy the good moments when they come. The love you have for your child will keep you going. I'd also encourage parents to connect with others going through something similar and to trust their instincts.

What you wish more people understood about epilepsy

I wish people would take epilepsy more seriously and understand that some children don't simply grow out of it. We take things one day at a time, staying hopeful while managing our expectations.

What are your hopes for the future?

We'd love to see her walking and communicating one day, but everything will happen at her own pace. Every day she surprises us, and we'll be right beside her every step of the way.