The Rainbow After the Storm: A Dravet Syndrome Story
Hannahtopia.com Editor note: This story is posted in honor of Dravet Syndrome Awareness Month (June) and International Dravet Syndrome Awareness Day (June 23). It is a story about the loss of a child as well as a story of a child with Dravet Syndrome and his siblings. Those who have lost a child due to miscarriage, stillbirth, or infant death may wish to exercise caution while reading. At the end of the blog article we have provided variety of resources for Rainbow Babies, infant loss, and Dravet Syndrome.
Rainbow Baby
by Rachel Hansen DeVito
After losing a baby girl at 20 weeks pregnant, I didn’t think that I could handle trying to have another baby. Our whole family, including my husband Jason and her three big siblings, were of course equally heartbroken. Many months later though my heart seemed to be settled on trying again, in hopes that another child could help to heal the loss.
Nicholas was our “Rainbow Baby” – the term given for a baby born shortly after the loss of another child (a “Storm Baby”). He was born at 40 weeks exactly and was perfectly healthy. He was the easiest baby of them all, and the other kids adored him. Little did I know at the time that he would be our Rainbow in other ways as well.
Dravet Syndrome Diagnosis
His first seizure happened when he was 16 weeks old. Soon after we noticed delays in his development. Dozens of tonic clonic seizures later – many of which required ambulance trips to the hospital to get them to stop – we finally had a diagnosis. Dravet Syndrome.
Dravet (“dra-VAY”) Syndrome is a rare and catastrophic form of epilepsy that includes developmental, neurological, and other health issues. It is typically caused by a random mutation in the scn1a gene, which codes for an important protein in the body that regulates the transfer of sodium in and out of cells, and this was the case for Nicholas.
Life with Dravet Syndrome
As an infant, Nicholas was hospitalized about once per month for prolonged seizures. Aside from the obvious concern for how an hour-long seizure might affect him long-term, there were also impacts on the family as a whole. Nicholas being in the hospital meant that I was in the hospital as well, which was hard for the other kids at times. We often had to divide the family or miss out on fun activities to avoid seizure triggers.
Ketogenic Diet Helped
Things improved significantly for Nicholas when he started The Ketogenic Diet at 12 months old. About 85% of his calories come from fat, with just a small about of protein and carbohydrates. Everything he eats is weighed to the nearest tenth of a gram. If he gets ahold of just a handful of Goldfish crackers, that will be all the carbs he could have for the whole day.
His older siblings are always on the lookout to make sure he doesn’t eat something he shouldn’t – though luckily his favorite food is mayo, which he is happy to just eat off a spoon (yum!). Nicholas went nearly a year without a tonic clonic seizure after starting Keto. He is now almost 4 years old, and although his seizures came back, they are relatively manageable and stop on their own.
Dravet Syndrome is More than Seizures
Dravet Syndrome is so much more than seizures. Nicholas has seen numerous medical specialists. He can walk and talk, but he is very far behind other kids his age, so he has required hundreds of hours of therapy. His siblings have always been the best therapy for him – and vice versa really.
Thomas (11), Jocelyn (9), and Matthew (7), love him ferociously and get excited with every new little thing he learns. They love to read him books and to listen to him sing nursery rhymes and pop songs. When I ask them if it is hard for them to have a little brother with Dravet Syndrome, they always say that they wish he didn’t have seizures but they are sort of used to the way things are.
My hope is that instead of feeling like they don’t get enough attention (because of all Nicholas’ extensive needs) they are able feel even just a fraction of the joy that Nicholas has all the time – to learn that despite all the Storms life may bring, you can still find that Rainbow.
Focus on the Present, Choose Joy
This is certainly something that Nicholas has taught me. Instead of having anxiety about the future, I try to focus on the present and choose joy. I also often think of this quote from “Little Women” by Louisa May Alcott: “I am not afraid of storms, for I am learning how to sail my ship.” We are lucky to have good nurses to care for Nicholas when we aren’t available (including my mother), as well as networks of other parents of epilepsy warriors to lean on for support. And no matter what struggles Nicholas has, his disease does not take away his ability to receive or give love, which I believe is the true meaning of life.
International Dravet Syndrome Awareness Day
International Dravet Syndrome Awareness Day is coming up on June 23rd, although of course for our family, every day is Dravet Syndrome Awareness Day. The terrible truth is that one in five individuals with Dravet Syndrome will die in childhood.
I am so thankful for the Dravet Syndrome Foundation and other organizations that are working hard to find a cure.
In the meantime, every morning that I wake up to Nicholas singing “Old McDonald Had a Farm” instead of the sound of a seizure is a gift from God and a “Rainbow after the Storm”.
Resources
- Dravet Syndrome: Dravet Syndrome Foundation
- Epilepsy: Epilepsy Foundation and Epilepsy Association of Western and Central Pennsylvania
- NillyNoggin EEG Caps for children who receive EEG procedures
- Rainbow Babies (a baby born shortly after the loss of another child): What is a Rainbow Baby?
- Resources for parents who have lost a baby due to miscarriage or stillbirth: The Top 10 Miscarriage, Stillbirth & Infant Loss Resources That Every Birth Pro Needs to Know About
- October 15 is Pregnancy & Infant Loss Awareness Day