What To Do When Your World Changes Immediately – Part 1 of an Interview with Shannon Kenitz

Dr Daniel Amen and Tana Amen BSN RN On The Brain Warrior's Way Podcast

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.


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Daniel Amen: We are so excited to be back with you and Tana and I are here with Shannon Kenitz and hold on to your socks because this is going to be very powerful. The title is "When Your World Changes Immediately." Shannon and I have known each other. She is the executive director of the International Hyperbarics Association. She's worked in the field of hyperbaric for goodness, almost 15 years. She was motivated by the story we're going to tell you today. She's also the executive director of MAPS, the Medical Academy of Pediatric 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.

Shannon Kenitz: Thank you.

Tana Amen: Shannon, I was talking to you before we got started, and I have to say, your story is, as a mother, is just heart-wrenching, so we're 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.

Daniel Amen: So your world changed?

Shannon Kenitz: Yes.

Daniel Amen: Immediately?

Shannon Kenitz: Pretty much immediately with my second daughter Grace-

Daniel Amen: So tell us.

Shannon Kenitz: I have two daughters: Lily and Grace. My daughter Grace is the one that has special needs. She was born a typical child and I took her home and within a couple weeks noticed that she was doing a lot of eye rolling and she wasn't really looking at me or responding to sound. So I called our doctor and I said, "I think something's wrong," and it took me about 6 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, 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."

So they took us by ambulance to the hospital and then the neurologist met us there and they first thought that she just had epilepsy. We were 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." We entered the hospital when Grace was 3-months-old and we left when Grace was 3-years-old.

The medicine wasn't helping Grace's seizures stop, and for that first basically 3 years of life, Grace had around probably 15 different biopsies, including an eye biopsy, rectal, brain biopsy-

Tana Amen: Oh my gosh.

Shannon Kenitz: We were transferred back and forth between our home-based hospital in Madison, Mayo Clinic, and New York Presbyterian. My daughter was dying and they couldn't figure out the cause. Then when they finally told me, I remember being at 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.

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 what Grace had, she had a mitochondrial cytochrome C reductase deficiency, they told me that at that time, there was only 4 other children sighted with that type of mitochondrial disease and all 4 had died before the age of 2. At the time of that particular diagnosis, Grace was a year and a half, so they basically told me to take her home and make her comfortable and let her go. I just remember thinking, "This isn't happening. I can't let my daughter die."

Tana Amen: Wow.

Daniel Amen: And she was your second child?

Shannon Kenitz: She was my second child.

Daniel Amen: So the first child is becoming traumatized by the chronic stress, the-

Shannon Kenitz: Mm-hmm (affirmative), and I really-

Daniel Amen: What was going on in the family.

Shannon Kenitz: 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 a huger rollercoaster. When you have a family, you're never expecting to get news like that, and one of the things I've learned that we really truly need to be thankful for our healthy kids, because at the end of the day there's really more that can go wrong than can go right.

I think that's a real lesson to learn, that we really need to feel very blessed and very lucky to have healthy children, because when you're faced with this type of a situation, 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.

Tana Amen: 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 5-months-old when we found out.

Daniel Amen: And it started with seizures.

Tana Amen: It started with seizures, and it was wicked, and she was 1 of 50 cases that have been diagnosed, and they said that most of these kids had died before the age of 3. So similar dynamics there. It's one thing to deal with the physical aspects of what's happening with your child, which is devastating. 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 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, trying to figure out an alternative.

Also, there was a level of, I can say this, maybe it shouldn't be that way, but there's a level of shame almost with how you handle it, or the guilt. At least, that's what we saw, what we witnessed.

Shannon Kenitz: Yeah. Absolutely.

Tana Amen: It was just heart-breaking to watch that happen and be a part of it and know that you can't take it away.

Daniel Amen: And she had more resources than most people have.

Shannon Kenitz: Yeah I mean, this was-

Daniel Amen: But at that time, you didn't.

Shannon Kenitz: Right, Grace is 18.

Daniel Amen: So tell us more about the journey.

Shannon Kenitz: Basically, when we got the diagnosis, then they transferred us back to our home-based hospital in Wisconsin, and the doctors, we had the diagnosis, and now they really didn't want to do much more to save Grace because they figured there was no point. Obviously, our private insurance dropped us like a year before when her bills reached over $10 million, so now Grace was just on full disability.

Tana Amen: Ouch.

Shannon Kenitz: They really said, "You have a healthy daughter. You need to take Grace home, make her comfortable, and you need to let her go." I remember when we went back to our hospital in Madison, our neurologist had pulled in my whole family, so there was probably like 25 to 30 people, my brothers and my aunts and uncles very close into this room. I thought that the doctor was going to be talking about what things were going to be going on with Grace and that 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.

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. 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 they actually brought in catalogs and they're asking me to look at caskets. I mean, as beautiful as a pink casket is, it wasn't something that I thought that I could ever do.

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 going to 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 my life for right now. They needed to let me do what I needed to do. I'm a psychologist by trade. I know how things go with marriages and divorce, with special needs.

My husband and I had completely two different views on whether to let Grace go or not, and the hospital actually ... 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. I took Grace out of the hospital in the middle of the night with my parents, and-

Tana Amen: So you basically took her AMA, which is against medical advice.

Shannon Kenitz: I did because I had heard so many parents, when our story hit national news, so many parents contacted me and said, "Shannon you really need to try this therapy called hyperbaric oxygen therapy," and that's really how I learned about it.

Tana Amen: Oh wow.

Shannon Kenitz: I learned about it from parents, not from physicians. They said, "Even though your daughter doesn't have cerebral palsy, or traumatic brain injury, she has a lot of those same characteristics." At age 3, Grace on a good day weighed 15 pounds.

Tana Amen: Oh wow.

Shannon Kenitz: She had a feeding tube. She was blind. She'd have anywhere between 100 to 200 seizures an hour.

Tana Amen: Oh my gosh.

Shannon Kenitz: She infantile spasms to the brain. She had bone marrow biopsies, transfers. She was just a very fragile child. They're like, "Just try it." I thought, "Okay." 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, five dollars. I took her out of the hospital and drove her with my parents and Lily to Florida.

Daniel Amen: They actually told you that if she died, that you would be charged with murder?

Shannon Kenitz: Yeah.

Tana Amen: 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?

Shannon Kenitz: Yeah. They were going to remove her feeding too.

Tana Amen: And they weren't willing to try that therapy.

Shannon Kenitz: No, they were not willing. One of my doctors was and one of my doctors, one of the intensivists in the hospital was like, "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. For sure we don't know because she's 1 of 5 kids with her type of diagnosis." So he's like, "You need to do what you need to do for your family," and thank goodness. I had no idea that hyperbarics was going to work the way it did.

Daniel Amen: So you took her out of the hospital, you drove her to Dr. Neubauer's clinic in Florida, and then what happened?

Shannon Kenitz: Well, we actually got checked in to Joe Dimaggio's Children's Hospital first because she was having issues with her feeding tube and so forth. I was trying to have, actually a SPECT scan done before I did hyperbarics with Grace, and we were in the hospital and they had SPECT 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 Neubauer's clinic, and he said, "I don't know why you would want to do it. Your daughter is not going to live." 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 Grace's SPECT imaging and she's had several, but that was the first place. 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.

Daniel Amen: So how did it change things?

Shannon Kenitz: It changed things because my daughter finally looked at me instead of through me. My daughter now is ... 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 we were told that she would never see, so we knew that the vision was coming back. We ended up going back to New York to see the specialist there, and he said sure enough that she had complete optic atrophy and finally the nerves were starting not to be pale blue anymore. She started to get her sight back.

We raised more money, went back and did some more hyperbarics, 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. Going into hyperbarics, Grace was 3-years-old, 15 pounds, blind, seizures, feeding tube, never walk/talk, had no idea that I was her mom. Now my daughter is 18. She's going to be walking to stage at graduation. She no longer has a feeding tube.

Tana Amen: Wow she walks.

Shannon Kenitz: She's gone to prom. She walks.

Tana Amen: She went to prom?

Shannon Kenitz: She went to prom. She talks. She swims.

Daniel Amen: Oh, you should show her a picture. She's beautiful.

Shannon Kenitz: Yeah, she is. We just had some senior pictures taken of her.

Tana Amen: Oh my gosh.

Shannon Kenitz: She's happy.

Daniel Amen: [crosstalk 00:13:45] should show her the camera.

Tana Amen: Cute.

Shannon Kenitz: She knows I'm her mom.

Tana Amen: Can you guys actually see that at all?

Daniel Amen: So for those of you who just listen to the podcast, you can also find it on YouTube as well, but this story is just heart-wrenching and beautiful.

Shannon Kenitz: It's just about not giving up hope.

Daniel Amen: I want to spend the next couple of minutes we have going what are the big lessons you've learned when your world changes immediately?

Tana Amen: That's a big change.

Shannon Kenitz: In those first months of it changing, the biggest thing that I learned was that it was okay to be angry and it was okay to grieve somebody that was still alive because you did get something taken. I thought I was going to have the perfect family. Lily finally had a sister. I learned that I could cry and I could let things be the way they were, but I couldn't stay in that moment. 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 that means you lose family and good friends that you went to college with or high school, that kids are the same age. The lesson there is that we all go through things in our life at different times, and people come in your life for a purpose. They leave your life for a purpose, 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.

You're going to have a lot of negative. You're going to have a lot of tears. 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. That was one of the biggest things that I learned, was just like learning to let go but then stand up for yourself and stand up for your decisions, and that's a tough thing to do with family.

Tana Amen: It really it.

Daniel Amen: Especially when the doctor is organizing a coup.

Shannon Kenitz: Right.

Tana Amen: Yeah.

Daniel Amen: And getting you to give up.

Shannon Kenitz: Yep.

Tana Amen: I just want to touch on that. I remember seeing our daughter go through something very similar, maybe not to that extreme, but I remember she had the name picked out because she had this vision of her little girl and the wedding and the proms and the dances and the ribbons. 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 happening. This can't be real," and then she had shame and guilt over her own feelings about that. It was-

Daniel Amen: And didn't even bring Emmy to some events because of how she felt.

Tana Amen: Oh it was so painful. 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 was less than perfect. I just remember that.

Daniel Amen: That breakthrough happened when she was able to do that and everybody-

Tana Amen: It was a huge breakthrough, but I just remember that early ... and that's normal. I think that that's okay.

Daniel Amen: That's normal, and it's important to have somebody to talk to about it.

Tana Amen: Well, we want you in our tribe, so we're so happy to have you.

Shannon Kenitz: Well thank you so much for having me.

Daniel Amen: So we are going to come back, and when we come back we are going to talk about the science of hyperbaric oxygen therapy. Stay with us.

Tana Amen: We've got Shannon all week right?

Daniel Amen: We have Shannon for the next couple of podcasts, so stay with us.

Shannon Kenitz: Thank you.