Baby Bristol's Fight against Epilepsy

On February 14, 2022, six month old Bristol Rivard was diagnosed with Infantile Spasms, also known as West Syndrome. Infantile Spasms are a rare and serious form of epilepsy that hinders the ability for a baby to learn and develop normally.

The Rivard Family, Brittany and Daren (parents) and their four beautiful children, Dawson (6), Kambrie (4), Ryder (1), and Bristol (6 months), are amazing and perfect in every way. They are kind, caring, and would be there for anyone in their time of need.

This will be a long, scary, and expensive journey for them all. Treatment for Infantile Spasms varies widely. Brittany and Daren will need to make multiple trips to Boston Children's Hospital to ensure Bristol receives the best possible care from neurologists specializing in IS. Additionally, Brittany and Daren have had to take multiple unpaid days off from work to be by Bristol's side and will need to continue to monitor Bristol and care for her long term.

Brittany and Daren's friends and family wanted to start this Go Fund Me page to alleviate the financial burdens Brittany and Daren are already facing. They will continue to struggle as Bristol's medical expenses continue to accumulate. Any donation you can make would be greatly appreciated. Bristol's story is written by Brittany and pasted below. Please pray for sweet baby Bristol and her family.

This Valentine’s Day Feb. 14th, 2022 our hearts were broken.

As I type this I feel so ill, but I am hoping it reaches many so everyone can pray for our sweet Baby Girl Bristol.

It all started a couple a weeks ago. We started worrying as to why Bristol was a bit behind developmentally, she babbled a lot but could not sit up or reach for toys well. I also, thought it was strange that she seemed to still have her Moro reflex (the newborn startle reflex). Her 6 month check-up came and the Doctor said that she looked great only naturally delayed and that is why she still had her reflex and was not sitting independently. That weekend we decided to not do housework and just made sure to spend time watching Bristol we also recorded two videos of her lingering reflex. Laying in bed I watched the videos, I read, I youtube’d, and decided to call the pediatrician and was unable to get a hold of someone to look at the videos as it was 9:30 at night. While googling I read about Infantile Spasms and it said they were very subtle and a rare form of epilepsy but extremely serious. I then looked up the UVM neurology department and saw they opened at 8am on Monday. I showed Daren and we decided that I would go to the ER early in the morning in hopes that they would allow us to send a video to a neurologist once they were in or get an EEG. The whole night I did not sleep I just had a feeling something was wrong and I kept rehearsing what I needed to say so I wouldn’t get sent home from the ER. I knew the only way to confirm she didn’t have infantile spasms was to get an EEG. In the morning, I woke Bristol up and bundled her to go to the ER at UVM before the other kiddos woke up. We arrived and got checked-in, a nurse first reviewed our videos of Bristol and said she agreed something was off. A PA was sent in then and after looking at the videos, told me he thought I should follow-up with my pediatrician and that we could go home. I had prepared for this moment, she was such a happy good baby, she seemed perfect nothing could be wrong, is what I’m sure he was thinking. I decided to lie and say that I had seen my pediatrician and that she said she needed an EEG and to be seen at UVM. He said “Ok” and left to speak with the pediatric team at UVM. Awhile went by maybe a half hour or more, and he came back with a piece of paper with a cell phone for the Director of Neurology, he told me that he would review my 2 videos showing what I was concerned about. I thanked him and sent the videos via text, I received a call back from the neurologist and he told me that he believed Bristol was having Myoclonic (Benign) spasms which are harmless but he agreed that we should do an EEG to be safe. I was so grateful, for technology in that moment. It took an hour for them to get her EEG on – each electrode is glued in a very specific place and her monitoring began. I looked at the EEG, there was a lot going on in it, not what I was hoping for but I tried to remain hopeful. After another hour – about 6 Doctors came in, I knew this wasn’t good, they asked me questions and I noticed one women’s face looked really sad when she looked at Bristol. I knew right then that she had IS, the Doctor’s didn’t need to say it out loud. The neurologist called and I asked him if she had them and he said “yes, it does appear she does”. Tears streamed down my face and I looked at beautiful Bristol in the bed, she was falling asleep, she looked so tired and so vulnerable. I called Daren and told him, when he got there, he held Bristol and we both just cried. We also witnessed her have a seizure in the emergency room for the first time that very same day. Next, An MRI was ordered to see if there may be a brain bleed, tumor, or malformation causing her spasms/seizure and it came back clear. Then a very expensive medicine was also put on order and would arrive in 36 hours. Because this disease is so rare, immediately we have become advocates for Bristol, they only see 1-2 cases a year at UVM. About 1/2000 babies are diagnosed with IS each year. There are various front-line meds all with a 60% chance of working to stop her seizures and spasms. We have a large say in her treatment and part of that was getting Boston involved in her case so we could ensure that her immediate treatment was the right one. Treatment for IS varies widely among neurologists, and each child responds differently to medicine.

Bristol will go to Boston March 1st and they will evaluate next steps if this medicine fails. For those just like us that had never heard of Infantile Spasms (IS), also known as West Syndrome, it is one of the most severe forms of epilepsy as it occurs during a pivotal time of development around 6 months. There are two symptoms one is seizures, and another is hypsarrhythmia a chaotic brain wave noise causing spasms throughout the day for some. Bristol has both hypsarrhythmia and seizures. These brain waves prevent her from developing normally as do her seizures and are detrimental to her long term quality of life. IS can be caused by a brain injury, malformation, tumor, genetics, or be cryptogenic meaning “No Cause Found”. Bristol has a clear MRI, and we are awaiting her genetics results. We are praying she is cryptogenic as limited data has shown that those children have the best chance at responding to medicine and having a normal life. Bristol takes after her Daddy and has the most amazing disposition, she does not cry when she has a seizure or spasm, she has not shown any severe side effects from the steroids yet, which we are so grateful for.

Bristol has a lot of Doctors, a neurologist, geneticist, dietitian, pediatrician, nurses, med students, PT/OT, & Case Manager. A psychologist came in and asked what has helped us through this week and I answered of course number one is family and friends who have been there checking in and offer their support in anyway. But another main thing has been advocating for Bristol, asking questions, reading EEG reports, getting her so quickly into Boston which is a level IV Epilepsy center and has Infantile Spasm specialists. Researching studies and medicine combinations and knowing that we are doing everything to help figure out how to stop this rare disease from hurting our baby girl.

Today after over a week in the hospital we received the news that the insurance covered her medicine and we were able to bring Bristol home. Bristol is on day 8 of her medicine and still has about one seizure and subtle spasms caused by her hypsarrhythmia throughout the day. The doctors have reassured us that they feel we caught hers much earlier than most parents, these spasms are so subtle and constantly misdiagnosed as an exaggerated or lingering newborn reflex and generally appear around 6 months. Daren and I together give Bristol her daily injection, she is on three different medications, and she has a splint on her wrist to help prevent contractures from constantly fisting due to her spasms and seizures.

We ask that everyone keep Bristol in your prayers, pray that we start to see her medicine work, pray that her genetics come back with no chromosomal abnormalities that may cause her other hardships in life, pray that we don’t have to watch her be stolen from us during those moments when she is having a seizure.

We want to say Thank you to everyone that has already helped us navigate this week, so we could stay with Bristol while she was in the hospital. Our family and friends have literally rearranged their lives to help get the kids home and to activites, provide meals, clean our home, tap trees, and so much more just so we can keep life for the kids as normal as possible. We certainly could not do this without all of you