When Ghillie was born at 25 weeks, Anna and her husband thought their biggest hurdle would be his micro preemie size and lungs. It wasn’t until after he was examined in the NICU that they learned about his in-utero brain injury which has life-long affects.
In this episode, Anna shares Gilbert’s birth and agonizing NICU stay during which it was suggested they remove him from life-support, hugely triggering to their tragic past with child death.
She also shares the way she has found her voice in public as they receive stares and ignorant comments in response to his extensive medical equipment.
Link to Flintstones Hearing Loss Simulation: https://www.youtube.com/watch?v=Va1wrnsMve0
Anna’s Instagram account: https://www.instagram.com/anna.margarets/
BetterHelp affiliate link: https://www.betterhelp.com/therarelife
Hello, you're listening to The Rare Life. I'm your host Madeline Cheney and today I have for you Episode 27: The story of Gilbert. Gilbert is one year old and sustained brain bleeds in utero causing birth defects like low-vision, seizures, and intellectual disabilities. In this episode, mom Anna shares a bit about Ghillie, his birth and NICU experience, and positive ways to approach others with the differences. Like a lot of us, Anna has been through some really hard situations that she shares in this episode and the next in her special topic episode. Now, as a little reminder, if you want to support this podcast and your well-being, I invite you to consider receiving online therapy through our sponsor BetterHelp where you are matched with a counselor that fits your specific needs. I love the affordability and the convenience of this service, especially for those of us for whom it is impossible to get out the door to traditional counseling. If this speaks to you, there is a link in the show notes for more information. I discovered Anna through Instagram. I have been following her for some time and I love her raw and honest pieces that she writes. She's a great writer. She has this ability to articulate these really complex and hard emotions and experiences. And so many times she's nailed something right on the head that I've been grappling with and didn't have the words for. I have very few instagramers that I follow religiously and Anna is one of them because I just really love reading what she writes. You can give her a follow @thebrainymom. I'll put a link in the show notes for that. So a little bit about their family: Anna's husband Mark is in active duty navy and has been for 10 years. They live with their family in Rochester, Minnesota. Their oldest is Jack and he is six years old and Anna describes him as the caregiver. Lillian is four years old, and she died at 35 weeks gestation, leaving their family totally heartbroken and continuously grieving. Lawrence is two years old and their little firecracker. And last comes their little surprise Gilbert, who we also refer to as Ghillie, who is one year old, their wayfinder, and whom this episode is all about. Anna is a lover of alternative rock music and chai tea lattes. She claims she could drink them every day for the rest of her life. Let's jump into our conversation.
Madeline Cheney 0:00
Hi, Anna, thank you for joining us today.
Hey Madeline, how are you?
Madeline Cheney 0:06
Great. I'm so excited to chat about life.
Yes, us too. Thank you for having us on. We're super excited to share a little bit of our story.
Madeline Cheney 0:16
Yeah! So let's start out with a little snapshot of where Ghillie is right now, a little bit about who he is. And his current age, which I realize, you know, will be outdated by the time this is released, but his current age now?
Yes, so, Ghillie is one year old and on July 14, he'll be celebrating kind of his one year corrected age, just since he was born almost four months premature. So he's technically only about 11 months old right now or is supposed to be. Developmentally, obviously, he's kind of behind in that for other reasons. But right now, the big things that he's doing in his life, a lot of his therapies we're targeting towards increasing his comfort day to day and kind of dealing with the muscle spasticity that he has due to cerebral palsy. And then we're also really hard-charging his vision therapies since he has a cortical visual impairment. So that means that his eyes are normal and intact and able to see and take in information, but his brain just can't process it. So that's that's kind of our big thing right now is working on the vision stuff.
Madeline Cheney 1:33
Right. And that's CVI right?
Yeah, it's CVI.
Madeline Cheney 1:35
When you said that I was like, "I never heard of that!" But Kimball has CVI too, I should have recognized the full official name.
Madeline Cheney 1:42
Okay. And I noticed that you've talked on Instagram, about how his vision loss is a really big deal, right? Like that's one of his main concerns that you have to deal with.
Yeah, that's, that's a big thing for him. That's played a huge role in his loss of interest in oral eating and then it also just doesn't give him I guess any incentive or motivation with lifting his head up or rolling or even reaching for objects just because he doesn't quite realize that they're there.
Madeline Cheney 2:15
Right. And that has been degenerative, right?
Yeah, so it's not technically a progressive thing. But kind of as his brain injury has evolved, we've seen it come out a little bit more and play a bigger role as everything's evolved with his brain. And that was one of the things that the doctors explained to us from the beginning when they first told us about his brain bleeds is that you know, he's going to seem fine at first, but then as skills typically move upward in the brain, throughout a child's development, you're going to see his skills, slow down and even stopped just because that brain tissue is no longer there.
Madeline Cheney 2:58
Interesting. Do they have any kind of projection of what his life might be or any idea of that?
Yeah, it's really hard to say because there's just such a huge spectrum of how this can play out. Obviously, since his bleeds were grade three and four, which are the most severe, that changes his prognosis a lot. It seems you know, what we've heard the most from doctors and also just in our own research that we've been doing, is that it'll play a huge role on neuro motor skills. And also vision and seizures, which he already has. So it it kind of affects everything, but there's no way of knowing what it's ultimately going to look like.
Madeline Cheney 3:45
Okay, wow. So what about Ghillie as a person, what kind of personality have you seen in him?
He is, for the most part, one of the happiest people that I know. He truly is the type that just loves life's little or simple pleasures, is always what I say. He's most content sitting in his chair in front of a window or outside because he can perceive the light so well. So I think that's something he really enjoys. He loves when the TV is on, obviously that's another light source. He loves playing with his brothers. That's one of his favorite times of the day is when his brothers come downstairs after they've woken up and come say hello to him in the morning. He just lights up and he's usually laughing and smiling. If I could describe his personality in one word, I would probably say "joyful".
Madeline Cheney 4:40
Oh, that's so sweet. What a blessing that he would be more content because you know, he's, he has to handle a lot. That's really neat.
Yeah, he's been through a lot in this little life.
Madeline Cheney 4:53
Yeah. And that reminds me too: Does he have a hearing loss?
Yeah, he has a hearing loss in his right ear, we're not sure if it's a result of his brain injury. I'm a carrier for genetic hearing loss. My sister has hearing loss in both of her ears and wears hearing aids. She's had those since she was three years old. So at this point, they're not sure, since it's just on one side, if that related to his brain injury or is it the genetic stuff?
Madeline Cheney 5:24
Interesting. So does he respond to sound pretty well?
Yeah. Yeah, with his hearing aid, we notice a huge, huge difference in his personality. He just seems kind of more attuned with what's going on. He can still hear pretty well without it though. And at the appointment, where he got his hearing aids, they were able to use the computer to simulate what his hearing is like so that Mark and I were able to hear it. And that's ultimately what pushed us towards getting him hearing aids, was just hearing how you know, even though it is a mild hearing loss and it's only in one ear, it's still a pretty noticeable difference.
Madeline Cheney 6:02
Interesting. That's cool. I've always wondered what it sounds like. I need to ask Kimball's audiologist for that!
Yes, you should. It was really neat.
Madeline Cheney 6:11
Yeah. We listened to the Flintstones simulation. Have you seen it? There's a YouTube video.
I haven't seen that one.
Madeline Cheney 6:20
Okay, well, it just shows different levels of hearing loss and it progressively gets more and more muffled. And it only took one time of watching that video. I was like, "Oh my gosh, I'm gonna put his hearing aids in way more often". Because it was you know, it's one more thing.
Madeline Cheney 6:37
So I wasn't putting the hearing aids in very often but like, after I saw that, I was like, "Oh my gosh, I'm convinced like I'm a believer. I'm gonna put those in."
For sure. For sure. I know. We have to kind of limit it just with his two-year-old brother running around likes to grab the hearing aid if it falls out. You know, like "That equipment's a little bit expensive. I don't really want to play with that, buddy."
Madeline Cheney 7:04
Yeah, totally. Then you have the little ear molds that pop off and the battery in the hearing aid...
Madeline Cheney 7:14
So going back just a little bit to visit vision loss. How do you handle that? How does that affect you as a parent?
Yeah, that's, you know, I can't pick what the hardest aspect is of all the ways his injury manifests itself, but that's for sure one of the bigger things for us is just that loss of visual connection that you don't really realize how important it is until it's not there. A few months ago, I had the opportunity to meet my cousin's little girl through the window since it was still times of Corona and I was just completely shocked by the fact that this little baby is able to make eye contact and track my movements and smile back at me while maintaining eye contact because just for months and months, I was used to not having that. So it really took me by surprise, like, "Oh, yeah, that's how babies are supposed to look at you." And that as a diagnosis, that one was really surprising to us too, because it was one of the things that they hadn't given us as a possibility. No one told us that vision loss could be an issue for him. And it wasn't until I was scrolling through Instagram and saw another mom's post about it with a video of her son and the way she described him, I was like, that is a lot like Gilbert. I wonder if he has this. So it was actually us who approached the doctors about it. His primary care doctor at the time was like, "Yeah, we should probably have a special MRI done just to assess the visual centers in his brain and get this confirmed because that is probably what it is."
Madeline Cheney 8:58
Wow, that's amazing. I think it's so cool when as a parent, you have an active role in finding things in asking the right questions. Because they're really good at what they do. But you know, you have that extra... I don't know. I believe in the parental instinct where you know, you can catch on to that.
Oh for sure. Yeah, yeah, you know, a doctor might see them for 20 or 30 minutes, but we do it 24/7 basically. So I always say, "Nobody knows your baby like you do."
Madeline Cheney 9:29
Yeah, yeah. Was that hard interacting with that baby? Was that is that difficult for you to like, to see her tracking you and stuff like that?
It was...Yeah, it definitely... It made me sad. You know, obviously, I'm still happy for her and like super excited that her baby is here. At the same time, though, just it really highlighted one of the big things that we're missing with Gilbert.
Madeline Cheney 10:01
Which is is always, you know, hard to, I guess be confronted by that reality.
Madeline Cheney 10:09
Yeah, yeah, and kind of reminded of what it could be like or it should be like.
Madeline Cheney 10:17
So I kind of want to go back in time to when you first found out but he had, you know, issues.
Yeah, so you know, obviously it would kind of tie in to Lillian a little bit too just with the fact that I went to the hospital originally for decreased movements for him which was the same as Lillian. And the first time I went to the hospital was 24 weeks and six days pregnant. They put me on the monitor there and he perked up almost straightaway so I stayed there. I was monitored for about four hours and they said, "You know, if you feel comfortable going home, you can just please come back if he goes back to not moving or if his movements change again." So I went home that night, the boys had made pudding with my mom that day. So it's like 10 o'clock I got home, I was this pregnant lady eating like two bowls of pudding, went to bed. And then the next day, his movements slowed down quite a bit again, to the point where he had almost stopped moving, which really just reminded me of Lillian's last hours. So after we put the big boys to bed, Mark came with me that time to the hospital. So I was exactly 25 weeks pregnant. They decided that night to do a biophysical profile just because that gives more detailed information on the baby. It's basically an ultrasound but they count baby's breaths and baby's movements, and everything. And he failed that first biophysical profile. So at that point, they said, "At the bare minimum, you're going to be staying here in the hospital for several days so we can monitor him, but we're going to give you some IV fluids and then repeat the biophysical profile again." So I got my fluids for about an hour, they came back and did the BPP again, and he failed a second time. So at that point, it was like everybody came into the triage room and were like, "You are going to have an emergency c-section right now because your baby is in distress. We've spoken with your maternal fetal medicine specialist, and he wants to get baby out of there and get baby safe." I even asked if I could pee and they said, "No, we we don't even have time for you to do that. You need to get to the OR now."
Madeline Cheney 12:52
So that was kind of our first like, "Okay, something's up. This shouldn't be happening at 25-weeks pregnant", but we we didn't really have any more information than that. And as I was being prepped for my C-section I kind of you know, I was just going through my internal Rolodex, thinking of other moms I knew who had micro preemies, or super small preemies. And, you know, they were placing in the spinal block and I kept telling myself, "Okay, you know, micro preemie, his lungs will probably be his biggest issue that's gonna be like, the main hurdle we have to get over", which was true to an extent, you know, just given the fact that he's still on oxygen a lot of the time. But I think it also showed just how uninitiated I was into things that can go wrong during pregnancy or other comorbidities that come with prematurity. So he was born at 9:48pm that night. They took him to the resuscitation room and got him intubated. And all that, I got to see him in my postpartum recovery room. They brought him in in the big neonatal transport unit before they took him down a few blocks to the higher level of the NICU. And I sent Mark to go with him. I was like, "You know, if things are going wrong and he starts taking a course towards death, I want at least one of us to be there with him." So I, you know, I just kind of shoved Mark out of the room basically, from my hospital bed. And then I had my nice little opioid induced sleep for that night. The next morning, the phone in my hospital room rang. And it was in such a place that I could not reach it. So I had to like grab on to the bedrails of my hospital bed and kind of scooch my post c section self over to try and reach the phone, which was incredibly painful. So I picked it up and like, grunted "Hello" on the phone. And it was the the neonatologist who had delivered Gilbert and he, at that time, finally told me that, "Hey, we just did a head ultrasound on Gilbert because he had a horrible night just in terms of respiratory needs and whatnot and we found that he has brain bleeds (interventricular hemorrhages), and it's a grade four on the right, which is the worst possible. And a grade three on the left." So that was the first time that I'd heard anything about his brain injury. And I think I asked the doctor I was like, "Okay, can you put like a tap into his brain or something to draw the blood out?" And that's when he said, "Unfortunately, there's no treatment for this, aside from giving him blood transfusions and platelets to basically, you know, keep blood in his body since he's actively bleeding and then platelets to try and slow the bleed down as much as we can." It was later that afternoon once they transferred me over to the bigger hospital for my recovery that they told us, "Hey, we actually saw these bleeds on his biophysical profile." So they occurred in utero. And that occurs in about one in every 10,000 babies, so I guess that would be probably what makes them the most rare is just how uncommon those in utero bleeds are.
Madeline Cheney 16:50
Yeah. What was that like to find out? Initially like when he first told you that initially?
Initially I was in shock, you know, it just seemed so unfair that we already had a baby who had died and now we were given these horrible life expectancy statistics and stuff for another baby. I, you know, I couldn't believe that it was possibly happening again. I think that that's what was hardest for me.
Madeline Cheney 17:26
Yeah. What were they telling you life expectancy wise right then?
Right then they were saying, "You know, we we have no way of knowing if he's going to survive these bleeds, it could be days it could be weeks." We were even given the option to pull his life support and switch him to comfort care just because of severity and perceived low quality of life. But throughout his day, we were told multiple times, not to expect him to survive childhood There's some data out there that says some of these kids don't live past their early 20s. Some of them lives a full life so we really don't know.
Madeline Cheney 18:08
Okay. But with Lilian, you have that experience of losing a child already. And so you have this looming possibility that probably is really hard.
Exactly. I mean, we have that first-hand experience of how fragile life is. And, you know, we're not insulated from death anymore. We know what happens after your child dies; you have to make those burial versus cremation decisions and you know, even beyond that, just the the lifetime of grief and the depths of grief that we've learned that follows that.
Madeline Cheney 18:44
Yeah, yeah. Wow. So what was what was his NICU experience like for you guys?
It was long. That's probably the best way I can describe it. It was not the happy NICU experience where, you know, it's kind of believed that babies are there just to grow and get bigger and catch up. You know, like I just kind of touched on, a lot of it was basically, "Are you sure you guys are committed to caring for him the rest of his life?" All those life support conversations. Those happened every few months while he was there, even as recently as a month before his homecoming from the NICU. We were still given the option to switch him to comfort care. Aside from that, like medically he needs he had a heart surgery to close a vessel that usually closes on its own after birth. His didn't. He had four eye surgeries to correct his retinopathy of prematurity. And you know, now Mark and I like dark-humor joke that: were those surgeries even worth it if he can't see?
Madeline Cheney 20:02
Yeah, yeah, aw.
Those were always just a huge pain for him to recover from. One of the cascading effects of brain bleeds is that the brain can swell and babies can develop hydrocephalus afterwards. So when he was about four-months old, he had his first brain surgery to relieve that pressure. He didn't have a shunt placed at that time. Instead, it was a endoscopic third ventriculostomy and chloride plexus colorization. So they basically punched a hole between the third and fourth ventricles of his brain to allow cerebral spinal fluid to circulate and then they also cauterized some of the structures in the brain that produce cerebral spinal fluid.
Madeline Cheney 20:50
So that was kind of our first attempt to control his swelling.
Madeline Cheney 20:54
And he was three months old?
Four months old.
Madeline Cheney 20:58
Yeah. Yeah, I mean his stay was a lot of respiratory stuff. He was intubated and extubated over six times. And we were on a really rapid course towards him needing a tracheostomy. But then after that brain surgery and the swelling was initially relieved, his respiratory status improved to the point that he was able to come home just with a nasal canula for oxygen.
Madeline Cheney 21:27
Wow. And what was your experience emotionally during his NICU stay? Specifically too, when they kept asking you about life support, talking about his quality of life, what was it was like?
I was mad. I would say his NICU stay was characterized by a lot of anger for me and I'm not an angry person. It was a very foreign emotion for me. We didn't argue with the doctors but we definitely took our stand, saying like, "Are you guys remembering that we've done this death thing before? We would so much rather do special needs." That's, you know, it's hard but to us it would be so much easier than having another child die.
Madeline Cheney 22:19
Yeah, like it's not that easy way out.
Madeline Cheney 22:24
So, since you have been through some really hard, negative things in your life at a young age, right, like the hard things. I wonder when hard things happen and maybe not even related to your children maybe related, but just hard things in general, as they come up, do you feel like you face them differently than you would have before Lillian and Gilly?
Yes, they don't really seem hard at all anymore. You know, if it's related to the other kids like them throwing a tantrum in public, now I would be like, "Whatever. Yeah, just do your thing. Don't mind the people staring." Yes, it has totally changed my perspective and I guess, threshold for dealing with a lot of things in life. They just don't seem as big a deal at all right now.
Madeline Cheney 23:22
Yeah, totally makes sense. How has your view of yourself changed because of Gilbert?
I think I've really finally found my advocacy voice. Growing up, I was a very, very shy, timid person. I would never raise my hand to answer questions in class, I didn't talk to a whole lot of people. But then, since Lillian death and Gilbert's NICU experience and everything that he faces now, I think I've really found my voice and realized that, you know, my voice is one that's worth other people hearing.
Madeline Cheney 24:12
Yeah, in what ways have you done that?
Um, I would say that some of the bigger ones are, you know, standing up to doctors when their decision don't align with what we've heard from other specialties or just our gut instinct kind of like you touched on earlier. And then even with strangers who see him out and about, you know, (granted he hasn't left the house to go to a doctor's appointment since November). But we do see strangers when he's downtown at appointments, who stare and make comments or even take pictures of him and I've really kind of found my voice in addressing that too and calling them out and saying, "Well, that's really not okay for you to say things like that or stare at him like that."
Madeline Cheney 25:11
Yeah, that's amazing. So, you had an Instagram post about inclusion. And you said the pitying comments and stares (like you're talking about) are not inclusive. For any listeners who don't have experience with having a special needs child, what is your advice of things to say instead of other things not to say?
Yeah, yeah. Things to say... My biggest piece of advice is just approach him like you would any other child you know. He might not see you, he might not respond to you, but just giving him that benefit of being treated like everyone else is so important for us. It's also really important for him just as he he grows up and potentially gains awareness of the things people are saying and doing around him. And he loves to be talked to, also. I think any opportunity to talk to a special needs person is huge. You know, it can even be as simple as complimenting their shoes or something.
Madeline Cheney 26:20
Mm hmm. Something instead of focusing on all the differences, right, like, "Oh, he has oxygen." What are some things that people have said that have been less than helpful?
We get a lot of "Oh, poor baby", when he's out at appointments just because they see the oxygen and sometimes he's hooked up to his feeding pump so they see that as well. Or even if I have to stop and suction him that one gets a lot of stares. And "Oh, poor baby." The other one I get a lot is, "What's wrong with him?" And I know it stems from people's kind of natural curiosity but, you know, the truth is he has medical issues, he has health issues, he has developmental issues, but there is nothing at his core that's wrong with him. I think it would be much more helpful for someone to ask like, "What does he need oxygen for?" or "Why isn't he making eye contact?" You know, I'm always happy to help answer questions and explain things because I think that's part of what what can break down stigma. But saying things like, "What's wrong with him?" is just really not helpful.
Madeline Cheney 27:33
Yeah, it personalizes it to him. Like something's wrong with him. Like nothing's wrong with him. His body has struggles but like, he's perfect.
Yes, he is.
Madeline Cheney 27:45
Yeah, I really like that. And to wrap up, one last question: What has been a more difficult side of Gilbert's diagnosis and a positive a moment. And it may not even be from his diagnosis like, maybe even despite of.
Madeline Cheney 28:07
Some memorable times throughout his life.
Yes, I would say one of the hardest things is that a lot of his diagnoses that have happened since his discharge from the NICU and just since this is kind of slowly merging or evolving brain injury, each diagnosis that we've gotten over the last six months to a year has kind of been like a check in the box that they told us to expect when they first told us that his brain was injured. And, you know, it's really hard to have those small amounts of optimism and hope that you just hang on to thinking, "Oh my gosh, maybe my kid will be the one to beat the odds and they'll be able to walk and talk and see and interact with their peers, but then all of that is crushed with every new diagnosis we're given. I think it just goes to show that, you know, everyone wants their kid to beat the odds. But you know that being on the good side of the statistics still isn't a guarantee. I think just coming to that realization, that "Oh yeah, this is as bad as they said it could be", has been really hard. But then on the other side, you know, his most triumphant and joyful moments, I could sell a book with those because he has so many in any given day. I always go back to his first Christmas this past year and just watching him look at the lights on the Christmas tree, and to have something in his environment that he could see and see so well was huge for us and he loved laying underneath the Christmas tree just looking at the lights. And that's a memory that I always go back to, especially on his harder days.
Madeline Cheney 30:05
I love that. So sweet. Thank you so much, Anna, for sharing your story and sharing your heart with us today.
Yep, thank you so much for the opportunity to share him. He definitely has quite a story to tell.
As usual, you can head to the website therarelifepodcast.com for photos of Anna, Ghillie, and their adorable family. There's a link in the show notes for the Flintstones hearing loss simulation video that I mentioned in the episode, as well as a link for more information about the service BetterHelp, and Anna's Instagram account if you're interested in following that. Next week's episode is Anna's special topic all about compound grief, as she shares more about Lillian's death and how that affects her parenting of Gilbert and her day to day life. See you then.
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