Creed's Story & What Will Never Be: Anticipatory Grief

Raylene: 0:02

Hi there, and thank you for joining us on AVM Alliance, a pediatric podcast for families and friends whose lives have been affected by traumatic brain injury, rare disease, brain disorders, or stroke. The purpose of this podcast is to focus on the kids side of brain injury with honest talk, news, information, and discussion for our community.

0:24

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. A big hello to all and happy Rare Disease Awareness Month. As a reminder, February 29th this year is Rare Disease Day. Now, my husband said that my pre interview intros on this podcast are just way too formal. So you are now listening to my first attempt at casual conversation with myself. Do do do. So before we get started with today's guests, I thought I would share a bit. Last month, after being seizure free, Kyler reset the clock. Resetting the clock is a common term in the epilepsy world and it seems like we're always measuring how long it's been since the last seizure. For Kyler, It was five months. Kyler had a cluster of seizures the second week in January and it required emergency rescue medicine, an ambulance ride, dad using the ambu bag because Kyler quit breathing for just a bit and it was a mess. So I was feeling, let's just say, a little bit extra pouty after that. the world of having a complex medical kiddo, I suppose. Well, anyway, I opened up an email sent to AVM Alliance and there staring at me was an invitation by the International Pediatric Stroke Organization to attend their medical conference in Toronto, Canada in March. I was, to say the least, I was absolutely shocked that the IPSO had invited our non profit to mingle with their doctors. And after looking at the invitation, I clicked on the conference agenda, and there is going to be a lot of presentations on brain vessel disease this go around. So I really, I really, really wanted to attend. Okay, why? That's a good question. I wanted to learn as much of the latest information as a realtor with no medical background can absorb. But even more importantly, I wanted to be there to introduce AVM Alliance to these doctors as an advocate for the pediatric stroke and brain vessel disease community. The biggest problem is how I'm going to get from little old Texas to Canada because you've got to fly, stay at a hotel, travel. It just costs so much money. And as y'all might have seen on the news, remember I'm a real estate agent and house sales are a bit, well, slow. Right now, and our nonprofit community has absolutely zero funds to help. So my wanting to go was kind of hanging on a wish and a prayer until earlier today, my sweet, sweet husband sent me a text. He said, you are about to be so excited. and I'm thinking what on earth, right? And the next thing I get is a purchase receipt for his and my plane ticket to go to Toronto and the total cost was 14. 07. 14. 07. I am so confused at this point because I know it would be impossible for Kyle and I to fly to this conference from Texas to Canada for 14. 07. So, It turns out that before Kyler's brain bleed and the pandemic, and we're talking now three plus years ago in 2020, Kyle had bought airplane and concert tickets to take me to see Taylor Swift in concert for our anniversary. Lots of people like Taylor's music. I am no exception, okay? So he knew it was something I had always wanted to do, go see Taylor perform, and it was going to be like this super big surprise. Well, it turns out even the bigger surprise for me and my future was COVID 19. Which, her concert was cancelled, I still have never gotten to see Taylor perform, and then my son had a stroke. I would have much preferred the Taylor Swift surprise to the surprise, your son is bleeding in his brain and has a rare disease. And well, those airline tickets were long forgotten. Until Kyle looked up the airfare cost on the website and saw we had a credit when he logged in. So I'm excited to announce that AVM Alliance will be at the IPSO conference and is super looking forward to meeting all those superhero doctors at the Hospital for Sick Children in Canada. Now, if I can just figure out hotel money. Let's move on. With February being Rare Disease Awareness Month, today I want to introduce everyone to Melanie. Her son, Creed, was originally diagnosed with a very rare condition called porncephaly while she was pregnant. And this eventually progressed to a diagnosis of hydroencephaly when she was 32 weeks. Creed is missing the majority of his brain. He essentially only has his brain stem and all The rest of his brain is missing. Doctors have deemed her child incompatible with life, but Creed has defied the odds and is now nine years old. Melanie, thank you so much for joining us. Hi. So tell us a little bit about your journey and your son.

Melanie Oellig: 5:44

Originally, I got pregnant right when I turned 20 and our anatomy scan, they just found some abnormalities. He had a heart murmur and then the front of his brain was really squished together. And there was a cyst on the left side of his brain. They were just concerned because they said it was usually like a genetic abnormality. They did an amniocentesis. And everything came back normal, but that really only tests the most common genetic mutations. And when I went in at 22 weeks, he had had a stroke and 10 millimeters of his brain had deteriorated. They diagnosed him with poor encephaly originally, but he had more strokes and more of his brain deteriorated. And they ended up diagnosing him with hydoencephaly. And then they diagnosed him with hydrocephalus. They just monitored him really closely because his head was retaining, you know, CSF and it was growing so fast, a lot faster than his body. They pretty much said, you know, the prognosis is not very good for kids that are born like this. They usually don't live very long. And then I went in at like, 38 weeks for one of my weekly ultrasounds and my ultrasound tech went and got the doctor because she was seeing what she assumed were seizures on the ultrasound and I'd mentioned it to the doctor because I was like, it's almost like my whole stomach starts shaking and it's really weird because it doesn't feel like when he has the hiccups or anything like that. And the doctor pretty much told her, yeah, those are seizures. We can't 100 percent confirm it because we can't do an EEG on a baby. He was like, but the repetitive movements and the duration makes me think that it's a seizure. So they did a non stress test and he did not pass the non stress test. So they induced me that night and told, you know, they pretty much told me like, he's not going to live for more than just a few hours. Obviously, that's not true. He's almost nine. So I delivered him at 38 weeks and they took him to the NICU. And he stayed there for like four days and he was eating by himself and doing everything the babies are supposed to do. So they pretty much handed me this kid and said, good luck. They didn't tell me like who I'm supposed to follow up with or to see these specialists. They were just like, look, he's going to die. Like that's. Wow. Like, just take them home, love them while you have them. So it was kind of scary because I was a first time mom and had more strokes since then, but we didn't know about his genetic mutation until he was seven. It pretty much just destroys all the basement membranes in your body. And it causes all the vessels to be extremely weak, which puts them at a very high risk for strokes and brain bleeds. You can only treat the symptoms of gold syndrome. You can try and control the blood pressure to lower their risk of a stroke, not give NSAIDs to lower the risk of a brain

Raylene: 8:43

bleed. One of the things that caught my attention that you said when you were telling your story is that Creed's shunt has failed a lot of times. And is that because he continues to have brain bleeds? It's

Melanie Oellig: 8:54

partially because of the brain bleeds because the blood coagulates in the shunt and then it blocks it. The other part is because he has had so many strokes and it's deteriorated part of his brain matter, there's just a lot of brain matter floating around that's not connected anymore and it's in little pieces so it tends to clog the shunt. And then because of the recurrent brain bleeds and strokes, the protein count in a CSF is super high, and that makes the CSF like super thick, and it can also cause issues with like the shut draining. Scans don't always show what they're supposed to, especially with kids that have brain damage.

Raylene: 9:33

What is something that keeps coming up that you want people to know about Creed or even about medical moms?

Melanie Oellig: 9:40

I mean, just mostly There is a lot of opinions about kids like my kid that, you know, some people don't believe that we should Do medical intervention or we should give medications that we should just put them on hospice and let them pass But the whole thing is is that they don't know your child Like I know my child better than anybody else. I'm his expert. I'm with him Wolf 24 hours a day for seven years now. I work night shift, but I No, everything about him and I wouldn't do something to him and not for him. I'm not going to put him through something that's going to prolong his life. That won't improve the quality of life and that's the whole thing. You know, we chose. Quality over quantity, as long as he's happy and he's comfortable, we will do certain medical interventions. Listen to the mom or the caregiver of someone like this because they know them better than anybody. I can't tell you how many times I've bought Creden and been like, I don't know what's wrong, but something's wrong. Something's not right. And his doctors have ran the tests that I asked them to run. I'm in it. Something's wrong, and that's what you need as a medical mom, is people who listen to you and don't make you feel like you're crazy for saying, you know, something, I don't know what it is, but something's wrong. You second guess yourself. You've been crazy because you're looking at your kid and there's only minimal changes to vitals, whatever, but you could feel it. You have the gut intuition that something is wrong, and you want to get out of it. And sometimes it takes months to figure it out, but you just have to follow.

Raylene: 11:26

Your intervention, you know what? I think that's excellent advice. I feel the very same way when we took Kyler to the local pediatrician here and I said, Hey, look, something is really wrong. Like, it's really wrong. And they were like, no, no, he just has a migraine. We'll give him a shot. Go take him and put him back to bed. And like every fiber of my being was like, I don't think so. This is not. This is not right, but it's really hard. A lot of times for I think parents and moms to second guess themselves on whether, you know, am I crazy or is there really, really something wrong because doctors are experts in a field that we don't necessarily know that much about.

Melanie Oellig: 12:06

So I think there's definitely a balance. People will accuse you of doctor shopping or whatever, but it's why I research so hard when I find his doctor is because I need people that are going to. Stand behind me and be like, look, this is what we need. And this is where we're going. And if mom's not comfortable going home today, then they're staying in the hospital.

Raylene: 12:28

I really appreciate you sharing your story and telling us about Creed. A lot of times I feel like you say to us other medical moms, what we're all thinking. About things with with doctors and other people and and I just really appreciate your self confidence.

Melanie Oellig: 12:45

Oh, thank you That come with all of this they're normal I am a great compartmentalist. I compartmentalize everything and shove it away and in its little box and pretend like it's not there until I eventually explode. And then I cry for like three days and then I shove it all back in that box. Because as his mom, I would love to keep him with me forever. But as a medical professional, I know that I can't let him suffer, so I, I can't be his mom when we're in situations where I'm choosing between life or death because I can't let my emotions get involved in those medical decisions. Not everybody is great at separating the two, but I just look at it as I would rather him be comfortable. And have a quality of life, then be suffering and prolong his life. And with that, and knowing that my son is terminal and he's gonna die, there's just a lot of grief. And ambiguous grief is really weird because you're grieving somebody who's still alive and It's not always just when your kid is terminal, you imagine this whole life for them and them, you know, growing up and graduating and getting married and having babies and living this long happy life. And when your kid has a stroke or a brain injury, even just like severe autism or something like that, like that whole life that you imagine just gets ripped away from you and The grief of it is real. Like there are days where I literally even nine years, you know, into this that I just cry and I can't, my heart just can't take it because I can't understand why it happened to my kid. And I, Grieve, you know, his first words, his first steps. I'm never going to see him get married. I'm never going to see him have kids. I don't get to see him grow up. Like I own a plot for him. I have a whole funeral planned out. I know he's going to die. And the grief from that some days is. And I feel like I'm drowning and my husband has more than one time had to pick me up off the shower floor because I just can't I don't have it in me anymore to get off the floor and I get so tired of fighting for everything for him. So when those days come, I have to give myself grace. I have to let myself. Be okay with not being okay. And for a long time, that was the hardest thing because everybody was just like, be thankful he's alive, be thankful he's this. And I'm like, I didn't say I wasn't thankful he was alive. I said, I was tired. Like there's a difference. The immense amount of stress on moms that have kids like this and learning how to deal with the grief and everything else, you just have to be gentle because it's not easy to be in this position. Watching everybody else's life move on around you, and you just feel like you're stuck because you're waiting to lose your child. It's exhausting in and of itself, and you know, you just have to build a tribe for the most part. I mean, my tribe is nurses and doctors and, you know, therapists and people that are around us every day. They understand, you know, and then I have a few friends that have kids that are similar to Creed and some of their kids have already passed and, you know, I'm very close with them and those people, I guess, make it a little bit easier to get through the days where I'm not okay, because they don't expect me to pretend like I'm okay, and the ones that have already lost their kids, Understand the ambiguous grief and they're there to help me through that process. And you know, if you're married, that's another big thing. The stress on a marriage, like the divorce rate for parents of special needs kids, not even, you know, medically fragile or terminally ill, is like 75%. Because of the stress that it puts on your marriage and my husband's learned to tune into me He'll walk in and he's like you're not okay, you know, like you're not you're physically here, but you're not mentally here You're stuck in your head, but it took a lot of years to get there It took until about four years ago when I finally Started saying, Hey, I'm not okay for him to realize the signs of me pulling away. And so you just have to communicate with everybody, even if not everybody can understand, because I've had plenty of people tell me that I'm just being dramatic or I'm attention seeking. And I'm like, no, I'm expressing my emotions. And I do express a lot of them on social media, because at 20 years old, I had a kid that they told me was going to die and he's now nine. And I had to learn how to navigate the medical system. And learn how to deal with my emotions and everything else on my own at 20 and all of my friends and everybody else is having perfectly healthy babies and I'm like, you know, I don't know where to go with this. I don't know anybody like me. So I share all of that so that someone that does have a kid like me doesn't feel so alone.

Raylene: 18:24

And if somebody wanted to follow you and follow your story, what's the best way for them to do that?

Melanie Oellig: 18:29

Most of what I share is on Facebook. I think it's a blog, but it's called Creed's Journey.

Raylene: 18:35

I will include the link in the comments and I would say I think there just comes a point when everybody around you expects you to be okay or doesn't want to hear or see that you're not and I just can't pretend that everything's just fine for the general community anymore. Well, thank you so very much for all your advice and information and sharing your story today. Thank you for having me. All the best to you and Creed and we'll continue to follow you on Facebook on Creed's Journey. Thank you. The focus of this month's Things to Think About is based on the children's book, When Meeting a Miracle, written by Josh Coleman. Josh's daughter, Fallon, was born with a very rare genetic disorder. She was given a 5 percent chance of surviving delivery and even lower odds post delivery. As a family, he and his wife spent 18 months in the hospital, a year of which was spent in a different state. This book was written to bring comfort to families that are up against tremendous odds and for those parents experiencing extraordinary pain with the loss of a child. His narrative serves as a reminder that every child is a miracle. For those whose time with their miracle is brief, Josh reminds us the opportunity to meet that miracle is a beacon of light in the darkness. Regardless of where you find yourself in life, this book underscores the importance of persevering because we all have a purpose. A heartfelt thank you to Josh for this impactful reminder. And as always, if you have questions, have a topic you would like to hear about, 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.