Scars & Healing

Healing & Scars

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest Talk News.

Information and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. Today we're gonna start with a little bit of background history on ischemic stroke Before visiting with our guest speaker.Sometimes blood vessels in the brain get blocked.

A pediatric ischemic stroke is a type of stroke that occurs when a blockage, such as a blood clot reduces or completely stops blood flow to part of the brain. [00:01:00] This causes brain cells to be damaged or die, which can cause long-term disabilities. Ischemic strokes are the most common type of pediatric stroke accounting for about 80% of stroke cases.

A perinatal stroke occurs during the time surrounding birth, usually during or right after delivery. It is common for a child who has had a perinatal stroke to have cerebral palsy and other disabilities. Our guest today, Mara Yale, was introduced to the world of pediatric stroke when her second child was diagnosed shortly after their birth.

She has made it her mission to share information to help parents achieve the best possible outcome. She is the project coordinator for pediatric stroke and brain injury education at the Massachusetts General Hospital, where she regularly hosts webinar videos with parent guests and medical professionals on topics to assist the pediatric stroke.

 With me today is Mara [00:02:00] Yale who now works in multiple ways, including being an author and educator to make it easier for others after pediatric stroke or brain injury. 

Mara Yale: I'm so glad to be here. 

Raylene Lewis: Absolutely. So can you tell us a little bit about your story? 

Mara Yale: Sure. Nobody chooses this journey and that was the case for me.

I had my second child was full. Large nine pounds, five ounces. I had hoped for a VBAC birth, a vaginal birth after cesarean, but that wasn't meant to be. So I had a cesarean birth, but full term Apgar scores were nines or tens, and at about 48 hours, I was still in the hospital because of the cesarean.

I noticed jerky leg movement in my baby's right leg, but I didn't say anything. But I sent my baby to the hospital nursery so I could get some sleep. And in the middle of the night, the [00:03:00] hospital pediatrician came and woke me up at two o'clock in the morning and said your baby's having seizure activity.

and needs to be transferred to a larger hospital, and that was the first that I knew anything was wrong. So I was separated for about 36 hours from my baby, and they ran all, all the tests and including an M R I and diagnosed the stroke, you know, at two, three days old. 

Raylene Lewis: Was it a hemorrhagic stroke or an ischemic?

Mara Yale: It was a, an ischemic stroke, a left middle cerebral artery infarction. I, I still remember texting that message to to my family members at that time on a flip phone. This was 13 years ago. 13 and a half years ago. 

Raylene Lewis: Do they know what what the cause is when that happens? 

Mara Yale: Most of the time, no. And.

They, they search, they, I think it's more common now to save the [00:04:00] placenta. That wasn't possible in my case. Cause the placenta was at one hospital and already discarded by the time the diagnosis came. But that's one place that they're looking now for clues that possibly placenta are shedding clots that then get into the fetal circulation.

Raylene Lewis: Oh, interesting. Well, how's your child?

Mara Yale: My child echo is thriving. They are 13 years old non-binary. They are in eighth grade, bilingual and English and Spanish. They play ice hockey and soccer. 

Raylene Lewis: Wow. That's, that's very impressive. So tell me a little bit about your journey.

Mara Yale: I had a multi-decade hobby interest in a, a modality for working with the nervous system called the Felden Christ Method.

And I'd used it to rehabilitate myself. So early on, I was primarily focused with Echos development in the first three years, first five [00:05:00] years. and I was able to bring to Bear Feld in Christ through my friends and colleagues in that the outcomes are pretty variable after this kind of brain injury, and I want to improve the outcomes for everyone.

So I've become pretty passionate as an advocate and educator around how to get the best possible outcome after such an injury. ,

Raylene Lewis: what can somebody expect after ischemic stroke, you know, with an infant? Do seizures continue and are you continuing to have to do extensive pt? I know it just must depend on, on where the stroke is in the brain, but I've also heard that the younger the child, hopefully the easier it is for them to 

to 

Raylene Lewis: recover.

Mara Yale: Yeah, so when a baby has a stroke, it's pretty different because they're not losing function, they don't have that function yet. So it may show up that the developmental trajectory of their two sides is different. So in Echo's case[00:06:00] there was nothing evident in their behavior until. Two months old when they were able to start reaching with their left hand, but not really reaching as often or as reliably or as confidently with the right hand.

So that was when it first showed up. Seizures can be an issue for, for us. We echo was on phenobarbital for three months after discharge and then never had seizures since there. There were a couple, there've been a couple scares over the years where I thought that they were having seizures and we sought medical care, but I actually remember one conversation with a, a neurologist early on, like, what's the likelihood of seizures in this case?

And it was slightly increased over the general population. But I convinced myself that I would not worry about it unless something presented itself in front of me. Of course, very reason. There are [00:07:00] families that for whom seizures start at an few years or many years into the journey.

Raylene Lewis: Well, okay, speaking of starting, how did you start advocating for pediatric stroke?

Mara Yale: When Echo was in the acute situation, I had a, a Caring Bridge site and I would just share updates about what was happening to friends and family. And then when Echo was almost four years old, I wanted to write, because I am a writer, it's been part of my core identity, so, I started writing a blog and I raised I think $5,000 and got it matched by my company and more than the money, the the impact was that people's other parents started writing to me and say, saying, that's incredible.

What Echo's doing at, at three and a half years old? How did you get them to this point? Can you help? So that was when the seed of this someday career got got watered. A little bit like that. There was something to offer these other families. [00:08:00] 

Raylene Lewis: And you credit her success to the same treatment that you started doing based on the research for when you had your own shoulder injury.

Right?

Mara Yale: I was able to take what I learned from understanding how the nervous system works and bring it into real. So it was a lot of integrating. How do you use both hands? How do you get a child on the playground? How do you as a parent not be terrified of a child falling on their head who's already had a brain injury, but let them take risks and learn their own capacity.

So it's really about creating the conditions for learning and supporting that at every step on the way. And then, yes, echo also had intensives. Felt in Christ with experienced colleagues who work with kids maybe every several months in the early years. 

Raylene Lewis: Now, is that what your book is about? I know that you're starting to write.

Mara Yale: Yeah, I my book is mostly [00:09:00] written. I'm looking for a publisher currently, it is for families affected by early brain injury. Or other neurodevelopmental challenge who are feeling overwhelmed by, by the prospect of this journey that they didn't choose. And my core message to them is that parents create the conditions for optimal development.

Raylene Lewis: Well, do you have any core bits of advice for us now? 

Mara Yale: I think the first is really to connect with other families like Raylene is supporting in this podcast, like to build community because that's essential the journey. Is a, a lifelong one after a child has any kind of brain injury and to learn as much as possible.

I, I also work now part-time for Massachusetts General Hospital, and I lead an education and outreach program all around pediatric stroke and brain injury. So each case is so different, but there [00:10:00] are many things that we can learn from each. So, as I mentioned, I lead this education and outreach series and we run monthly live sessions, which are really important to be live because that also helps build the community aspect.

So we always pair a family with an expert speaker and I, I hesitate every time I say the word expert, cuz I try to flip the conventional wisdom and the experts are. Most often the, the parents or the family members or the child themself, if they're old enough. We try to introduce voices from young adults through you know, even ch kids as long as young as 12 have spoken on our series.

Raylene Lewis: Actually love your series. I was looking at it back over the weekend, and I will absolutely include in the description to this podcast the links and YouTube channels. What resources do you recommend people go to that you guys can offer who are dealing with stroke? 

Mara Yale: So, I mean, the, the best resources [00:11:00] are of course, your own.

Clinicians and if you, depending on where you live, it may be worth traveling to a major medical center to get the expertise of a pediatric stroke team if that's possible Especially if you're in a more remote part of the world or part of the country where you don't have access to a neurologist with a specialty in pediatric stroke.

I think that it's really essential. And I happen to live near Boston, Massachusetts, and we have actually multiple options for pediatric stroke. , but we're followed every year or every two years depending on sort of what's going on throughout the, the lifespan. Which is really critical. I think it's important as you get a child towards school age that you understand their neuropsychological profile, what might influence how they learn and how they function socially in a school environment.

Raylene Lewis: Very good advice. Do you still [00:12:00] have your blog? Do you still blog regularly? 

Mara Yale: I'm not actively blogging, but I have two different blogs. One from when I first wrote in the early years, and one that supports my, my private practice now as a Feld in Christ practitioner. 

Raylene Lewis: So if somebody wanted more information on like some people have never even heard of Feld in Christ.

Can you explain that just a little bit more for us? 

Mara Yale: Yeah. So it's based Moshe Felden Christ was an Israeli physicist and engineer. Who injured his knees and rehabilitated himself. And so it's really based on neuroplasticity and how we can create movements and little mini lessons that are like how babies learn to do everything but slow it way down.

So, If it's slowed way down, then there's a chance of, of learning in a different way than our habit. And often going slower also can work around [00:13:00] like an increase in tone or spasticity that many of these children's show show. 

Raylene Lewis: That's really, really interesting. Well, is there anything else that you would like to, to share today that we haven't kind of gone over?

For the community, the listen. 

Mara Yale: I'm just happy to connect and I think that more voices supporting families is really what we need.

Raylene Lewis: What changes do you hope to see as a result of your efforts? 

Mara Yale: So I, I hope that more of us are connecting and sharing what we know and what we've each learned from our unique journey, as well as asking questions of the doctors and therapists to push, not just.

Adequate outcomes, but really for optimal outcomes. These children and families deserve to live full enriched lives and not to be limited by what therapies therapists allow, or insurance companies allow, or what schools allow. So I think that the sky's the limit for these [00:14:00] children. and the, the ones best poised to fight for that are often the, the parents or caregivers.

Raylene Lewis: I could not agree more. I would just add to that one thing that, you know, don't ever give up based on what anybody else says because in particular I feel like we are constantly fighting with insurance companies, at least for us, for therapies that are still needed. Keep asking question. We've been told no several times by insurance companies and said, okay, well then, you know, explain to me what the process is to make it a yes and, and keep going.

And so far that has resulted in a lot of time. But it also has resulted in, in getting the therapies needed. 

Mara Yale: Yes. And the time is real. Like, it's almost like taking on another job, . 

Raylene Lewis: It's, well, thank you so very much for joining us today. 

Mara Yale: Thanks. I'm delighted to to be on and to talk with you 

Raylene Lewis: in chapter 10 of our focus book, Suffer Strong.

[00:15:00] Jay talks about the need to redefine healing. He points out that the scars you have mean that you have lived, and they are a reminder of the healing process. He shares the truth that scars can lead to a deep communication between fellow sufferers because they are a way for others around you to see and understand what has gone on in your life.

All hearts long for healing, he says. With a tattoo, we get to choose the story to tell on our body, but our scars are the story we receive about the life we are still living. It is possible to be experiencing healing and still not feel healed like we thought we would, but we should not overlook a present healing in search of a future wholeness that may not come to be on.

We all have scars if nowhere else than on our hearts. And when we reveal our scars to ourselves and to others, they show that we have lived the [00:16:00] least serious of all the scars are the ones that you can see on the outside. Jay says that the most important part of our healing process in dealing with our scars is figuring out exactly what our purpose is, what we are living for.

Today's quote is by Demi Lovato. Scars are like battle wounds beautiful. In a way. They show what you've been through and how strong you are for coming out of it.

I always like to end our time together with a motivational song recommendation. I don't play the song because of copyright laws, but there have been many times on this journey where a song has really spoken out to me and helped me with my. Today, I'm recommending you. Check out all I know So Far by Pink from her 2021 single, a song she wrote for her daughter, encouraging her to remain strong when [00:17:00] going through the hardships of life, by confronting the sources of her pain and refusing to hide her personal truth.

Even when times get dark and mistakes are. In the song she tells her daughter, the darkness will come and go. But if she lays down her sword and dives into the pain, then she'll be proud of her skin. That is full of scars.

And as always, if you have questions, have a topic you would like to hear about, or a great song or motivational quote, don't be shy. Share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast. Remember, you're never walking this journey alone.

Take care y'all.