Change Your Brain Every Day - What To Do When Your World Changes Immediately - Part 1 of an Interview with Shannon Kenitz

Episode Date: May 30, 2017

When Shannon Kenitz’ daughter Grace was first taken to the hospital at 3 months old, she would never have guessed that she wouldn’t leave the hospital until she was 3 years old. When Grace was then diagnosed with Mitochondrial disease, the doctors told Shannon her best course of action was to make Grace comfortable and let her go. What happened next was unbelievable, heart-wrenching, and ultimately triumphant. 

Welcome to the Brain Warriors Way podcast. I'm Dr. Daniel Amen. And I'm Tana Amen. Here we teach you how to win the fight for your brain to defeat anxiety, depression, memory loss, ADHD, and addictions. The Brain Warriors Way podcast is brought to you by Amen Clinics, where we've transformed lives for three decades using brain spec imaging to better target treatment and natural ways to heal the brain. For more information, visit amenclinics.com.

The Brain Warriors Way podcast is also brought to you by BrainMD, where we produce the highest quality nutraceutical products to support the health of your brain and body. For more information, visit brainmdhealth.com. Welcome to the Brain Warriors Way podcast. We are so excited to be back with you and Tan and I are here with Shannon Kennets and hold on to your socks because this is going to be very powerful the title is when your world changes immediately and Shannon and I have known each other she is the executive director of the International hyperbaric Association she's worked in the field of hyperbaric medicine for

goodness almost 15 years. She was motivated by the story we're gonna tell you today. She's also the executive director of MAPS, the Medical Academy of Pediatrics Special Needs, which is a community of physicians that I'm blessed to be able to teach at, internationally recognized speaker, has also appeared on Montel Williams, is opening a new clinic with Jenny McCarthy outside of Chicago. So Shannon, welcome. Thank you. Yeah, Shannon, I was talking to you before we got started, and I have to say your story

is, you know, as a mother, it's just heart-wrenching. So really happy to have you here today because we deal with this a lot with our patients. So I think it's going to really, really connect with a lot of people. So your world changed. Yes. Immediately. pretty much immediately. But so tell us grace. I have two daughters, Lily and grace, my daughter, grace is the one that has special needs. She was born, you know, typical child. And I took her home. And within like a couple weeks, notice that she was doing a lot of eye rolling, and she wasn't really like looking at me or responding to sound. And so I called our doctor, and I said, you know, I think something's wrong.

And it took me about six months to get an appointment. And they sent me to an ophthalmologist first because I talked about the eye rolling. And then a neurologist. And we lived like an hour outside of the city. And so they had me go to the ophthalmologist first. And when Grace did this eye rolling, he said, I believe your daughter is having seizures. And so they took us by ambulance to the hospital. And then the neurologist met us there.

And they first thought she just had epilepsy that, you know, we're in the ER. They said we're going to have to hospitalize her. They put her in the intensive care unit to get the seizures under control. And I thought, okay, epilepsy. I had a friend in high school that had epilepsy. I can handle this. And we entered the hospital when Grace was three months old, and we left when Grace was three years old. The medicine wasn't helping Grace's seizures stop. And for that first basically three years of life, Grace had a round of probably the 15 different biopsies, including an eye biopsy, rectal brain biopsy. We are transferred back and forth between

our home-based hospital in Madison, Mayo Clinic in New York, Presbyterian. And my daughter was dying and they couldn't figure out the cause. And then when they finally told me, and I remember being a Mayo Clinic when one of our biopsies came back from New York and they had a diagnosis. And I remember being so excited because I thought with the diagnosis, you're going to have a prognosis and you're going to fix it. You know, it's medicine. These doctors are going to tell me now we can do this.

But in the same breath that they told me that, um, with what Grace had, she had a mitochondrial cytochrome C reductase deficiency. They told me that at that time, there was only four other children cited with that type of mitochondrial disease, and all four had died before the age of two. And at the time of that particular diagnosis, Grace was a year and a half. And so they basically told me to take her home and make her comfortable and let her go. Oh, wow. And I just remember thinking, this isn't happening. You know, I can't let my daughter die.

Wow. And she was your second child. She was my second child. So the first child is becoming traumatized by the chronic stress that is going on in the family. Yes, and Lily was with me at all times. I thought that was really important that she stayed with me and stayed with her sister. And it was just a huge roller coaster. I mean, when you have a family, you're never expecting to get news like that.

And one of the things I've learned that, you know, we really, really truly need to be thankful for our healthy kids, because at the end of the day, there's really like more that can go wrong than can go right. And I think that that's a real lesson to learn that we really need to feel very blessed and very lucky to have, you know, healthy children. And because when you're faced with this type of a situation, you know, you can either completely collapse and go into a gray, dark place, or you can say that you're not going to listen and you're going to find things that can possibly help your child live a better life than what you're being told. You know, as a nurse, I certainly saw these situations happen a lot at the hospital, but you never think it's personal. You don't think it's personal until our granddaughter was born with special needs.

We didn't know it either. She was five months old when we found out. And started with seizures. Started with seizures. And it was wicked. And she was one of 50 cases that had been diagnosed. And they said that most of these kids had died before the age of three. So similar dynamics there.

And it's one thing to deal with the physical aspects of what's happening with your child, which is devastating. And I remember seeing that the hardest part in the hospital were the parents. The hardest part was the parents because there's nothing you can do. The caretakers are just devastated. They're exhausted.

But when you're dealing with that firsthand, I remember, you know, our oldest daughter, who the myriad of emotions going through you, the guilt, the fatigue, the just total despair, not knowing what to do, not believing the doctors, like trying to figure out an alternative and just the, also there was a level of, I can say this, it's not really, maybe it shouldn't be that way, but there's a level of shame almost with like how you handle it or, you know, the guilt. There's at least that's what we saw, what we witnessed. Absolutely. And it was just heartbreaking to watch that happen and be a part of it and know that you can't take it away. And she had more resources than most people have.

Yeah. I mean, you know, this was. But at that time, you didn't. Right. Grace is 18. So tell us more about so the journey you know basically when great when we got the diagnosis then they transferred us back to our home-based hospital in wisconsin and um the doctors you know we had the diagnosis so now they really didn't want to

do much more you know to um save grace because they said figured there was like no point obviously our private insurance dropped us you know like a year before when her bills reached over $10 million. So now Grace was just on full disability. So they, you know, really said, you just really, you have a healthy daughter. You need to take Grace home, make her comfortable and you need to let her go. And I remember, you know, when we went back to the, our hospital in Madison, our neurologist had pulled in my whole family. And so there's probably like 25 to 30 people, my brothers and my aunts and uncles very close into this room. And I thought that the doctor was going to be talking about what things were going to be going on with Grace and that, you know, I need their support,

you know, because Grace is going to have a long road and so forth. But really, it was more of an intervention for me, for them to convince me to let Grace go. And I think that that moment in my life really changed because I knew as a mom that there was no way that I could be a good mom to my other daughter had I not tried everything for Grace and so in that moment and they even had our family priest in the room and I remember when they were telling me that I needed to let Grace go and you know they brought actually

brought in catalogs and they're asking me to like look at caskets but I mean as beautiful as a pink casket is wasn't something that I thought that I could ever do and I remember finally just standing up and saying you know what and I remember looking over at my family priest and going I'm really sorry because I'm gonna swear and I basically told people to get the hell out of the room if they weren't going to support me and support everything that I could do for grace before I let her go and if they couldn't do that then they needed to just be out of the room if they weren't going to support me and support everything that I could do for Grace before I let her go. And if they couldn't do that, then they needed to just be out of my life for right now. And they needed to let me do what I needed to do. And I'm a psychologist by trade. I know how things go with marriages and divorce with special needs. And my husband and

I had completely two different views on whether to let Grace go or not. And, you know, the hospital actually, you know, what people don't realize is hospitals can make decisions to let your children go when they're on life support. And I lost that battle. And so I took Grace out of the hospital in the middle of the night with my parents. So you basically took her AMA, which is against medical advice. I did. Because I had heard so many parents when our story hit story hit national news so many parents contact me and said Shannon you really need to try this therapy called hyperbaric oxygen therapy and that's really how I learned

about it I learned about it from parents not from physicians and they said even though your daughter doesn't have cerebral palsy or traumatic brain injury she has a lot of those same characteristics I mean at age three Grace on a good day weighed 15 pounds. She had a feeding tube. She was blind. She'd have anywhere between 100 to 200 seizures an hour. She had infantile spasms to the brain. She had bone marrow biopsies, transfers. She was just a very fragile child. And like, just try it. And I thought, okay. And so I did these little fundraisers and I raised money. And it wasn't like I could give the money back because some people sent in like a dollar, you know, $5, you know. And so I took her out of the hospital and drove her with my parents and Lily and to Florida.

And they actually told you that if she died that you would be charged with murder. Yeah. Wow. So they were going to take her off life support. Let me get this straight. They were going to take her off life support. But if she died in transfer, you were going to be charged with murder yeah wow so they were going to take her off life support let me get this straight they were going to take her off life support but if she died in transfer you were going to be charged with murder yeah they were going to remove her feeding too and they weren't willing to try that therapy no they were not willing one of my doctors was and one of my doctors if they one of

the intensivists in the hospital was like you know it's not going to hurt her and i don't know if it's going to help her but if it helps you let go so that you can move on with your life. And it might give her a chance. We just don't know because for sure we don't know because she's one of five kids with her type of diagnosis. So he's like, you know, you need to do what you need to do for your family. And thank goodness. I mean, I had no idea that hyperbarics was going to work the way it did. So you took her out of the hospital.

You drove her to Dr. Neubauer's clinic in Florida. And then what happened? Well, we actually got checked into Joe DiMaggio's children's hospital first because she was having issues with her feeding tube and so forth. And the doctor there, and I was trying to have actually a spec scan done before I did hyperbarics with Grace. And we were in the hospital, and they had a spec scan done before I did hyperbarics with Grace. And we were in the hospital and they had a spec imaging in the hospital. And I talked to the doctor and I said,

is there any way that you would do this for me while she's in the hospital? Otherwise, we would have done it outpatient at Dr. Neubauer's clinic. And he said, I don't know why you would want to do it. It's you, your daughter's, you know, not going to live. And I said, I don't know why you would want to do it. Your daughter's not going to live. And I explained the situation. I couldn't return the money that I had to do the hyperbarics. And so Joe DiMaggio Children's Hospital was the first place that did gracespect imaging. And she's had several, but that was the first place.

And we did it. She got well enough for us to leave and go to the hotel. And we started hyperbaric therapy. And it forever changed our life. Oh, wow. So how did it change things? It changed things because my daughter finally looked at me instead of through me. My daughter now is, you know, the first, you know, we've raised enough money to do 80 sessions. And she started to move her fingers and try to lift her head up. And we noticed that she would grab for things without us rattling. And, you know, we were told that she would never see.

So we knew that the vision was coming back. And so we ended up going back to New York to see the specialist there. And he said, sure enough, that her, you know, she had complete optic atrophy. And finally, the nerves were starting not to be pale blue anymore. And started to get her sight back and so we raised more money went back to did some more hyperbarics and because back then hyperbarics was not accessible as easily and it was more expensive than what it is for families today because of the mild portable chambers that you can have um and so um and now you know going into hyperbarics, you know, Grace was three years old, 15 pounds, blind, seizures, feeding tube, never walked, talk, had no idea that I was her mom. And now my daughter is 18.

She's going to be walking the stage at graduation. She no longer has a feeding tube. She's gone to prom. She walks. She went to prom. She went to prom. She talks. She swims. She bikes. Show her a prom. She went to prom. She talks. She swims.

She bikes. Oh, she should show her picture. She's beautiful. Yeah, she is. We just had some senior pictures taken of her. Oh, my gosh. And she is just, and she's happy. But, you know, most of the time, she knows I'm her mom.

Can you guys actually see that at all? So, for those of you who just listened to the podcast you can also find it on youtube as well but i mean this story is just heart-wrenching and beautiful it's just about not giving up hope so i want to spend the next just couple of minutes we have going what are the big lessons you've learned when your world changes immediately that's a big change like in those first like months of it changing um the biggest thing that i learned was that it was okay to be angry and it was okay to grieve somebody and that was still alive because you did get something taken you know I thought I was gonna have you know the perfect family and I was gonna you know my Lily finally had a sister and um I learned that it was oh that I could cry and I could let things be the way they were, but I couldn't stay in that moment.

That, you know, the biggest lesson I learned was that I needed to grieve. I needed to cry. I needed to let go of people. I needed to put myself around positive people. And sometimes that's really hard because it means that you lose, you know, family and like good friends that you went to college with or high school with that kids are the same age. And, you know, the lesson there is that we all go through different things in our life at different times and people come in your life for a purpose. They leave your life for a purpose. And, you know, and if it's a friendship or a bond that's meant to happen, later on when you're in the right place, it's going to happen.

But you shouldn't feel bad about telling people that they can't be around you if they're just going to be negative. Because you're going to have a lot of negative. You're going to have a lot of tears. I mean, I remember a time where I would ring like a cowbell before going into Grace's room when she did get to come home because I didn't know if she was going to be alive or if she would be gone. And I didn't know if I could handle it not hearing something from that room. And then I would have sent somebody else in the room. So, I mean, that was one of the biggest things that I learned was like just learning to like let go, but then stand up for yourself and stand up for your decisions. And that's a tough thing to do with family.

It really is. Especially when the doctor is organizing a coup and getting you to give up. Yeah. And I just want to touch on that because I remember going through seeing our daughter go through something very similar. Maybe not to that extreme, but I remember the, she had the name picked out because she had this vision of, you know,

her little girl and, you know, the wedding and the proms and the dances and the ribbons and the, she had a vision. I mean, we all do, right? We have a vision of what our family is going to be like. And that mismatch of this isn't, this isn't happening. This can't be real. And then, and then she had shame and guilt over her own feelings about that.

And it was. And didn't even bring Emmy to some events because of how she felt. Well, because she couldn't handle people. She adored that child and she could not handle other people looking at her in a way that she felt you know was less than perfect and so i just remember that that that breakthrough happened when she was able to do that and everybody it was a huge breakthrough but i just remember that early and that's normal like i think that that's okay and it's important to have somebody to talk to

right about it well we want you as our in our tribe so we're so happy to have you thank you so much for having me i'm so we're going to come back and when we come back we are going to talk about the science of hyperbaric oxygen therapy stay with us shannon all week right we have shannon for the next couple of podcasts so stay with us thank you've got Shannon all week, right? We have Shannon for the next couple of podcasts. So stay with us. Thank you for listening to the Brain Warriors Way podcast. We have a special gift for you. It's an opportunity to win an evaluation at the Amen Clinics. All you have to do is subscribe to this podcast, leave a review, and rate us on iTunes.

To learn more about Amen Clinics and the work we do, go to amenclinics.com. You can also learn about our nutraceutical products at brainmdhealth.com. Thanks for listening.