Latest / The Seed Project / Unyielding Love and Advocacy: A Mother's Journey with Trisomy 18

Transcript

Unyielding Love and Advocacy: A Mother's Journey with Trisomy 18 · The Seed Project

0:41
Charlotte: Hi, everyone.
0:42
Charlotte: Today I welcome Shonda Sully on the podcast.
0:46
Charlotte: Shonda is a mother of a trisomy 18 warrior Harper, grace.
0:51
Charlotte: She served 11 and a half years in the United States air force before giving birth to Harper, grace.
0:57
Charlotte: After her family's traumatic experience of Harper's 162 day hospital.
1:02
Charlotte: Stay.
1:03
Charlotte: She felt called to a career in nursing.
1:06
Charlotte: She went back to school in a retain her nursing degree, where she graduated with honors.
1:11
Charlotte: She has dedicated her life to serving God and advocating and caring for children like Harper, grace.
1:17
Charlotte: Shonda.
1:17
Charlotte: Thanks so much for joining me today.
1:19
Shawnda: Thank you so much for having me.
1:22
Charlotte: we met because I took care of, your daughter when she was in the NICU.
1:27
Charlotte: I wanted to go back a little bit further, with your story when you and Jeremy found out that you were pregnant and, all the excitement Didn't you, make your announcement in, Tennessee gear,
1:37
Shawnda: we did actually, and it's funny because this Facebook memory just popped up on my Facebook the other day.
1:43
Shawnda: But, um, yeah, we had, went to a Tennessee Florida game back in 2016 and, we hadn't told anyone yet.
1:51
Shawnda: We were waiting until we got out of the first trimester.
1:54
Shawnda: And we had taken this little bitty teeny tiny Tennessee onesie with us to Knoxville to the game and we had pictures taken with it and it basically said just says, start him young, raise him right and make him Tennessee fans, essentially.
2:09
Shawnda: And we had taken our pictures with it and we waited until we got out of the first trimester to send that picture out to all of our family and friends so we kept it a secret.
2:18
Shawnda: We'd actually kept it a secret because we had lost our first kid right at the end of our first trimester.
2:23
Shawnda: Um, and so we waited until we were out of, out of the first trimester to tell anyone.
2:28
Shawnda: And that's how it started.
2:31
Charlotte: As you're in your pregnancy journey and, celebrating with, friends and family, when is it that you knew, your road might be a little bit, different than others?
2:43
Shawnda: Yeah, so, um, after we did the, the pregnancy announcement, with us being military, we were not able to go and see our family for anything, so we did a virtual gender reveal when Harper was, I guess I was 16 weeks gestation, um, we went to just a 3D ultrasound place, got that taken, and we had him stuff, you know, the The gender and like a little card or whatever.
3:08
Shawnda: And then we did a gender reveal on like, FaceTime with all of our family.
3:12
Shawnda: And we were just, we had just finally let out like a sigh of relief.
3:17
Shawnda: Okay.
3:17
Shawnda: We made it outta the first trimester.
3:19
Shawnda: Everything's doing great.
3:21
Shawnda: Um, everything's progressing the way it should.
3:24
Shawnda: And I had, had my, I don't remember which, which exact doctor's appointment it was, but I was at one of my OB appointments right before that.
3:35
Shawnda: I had what's called the quad screening, which is done at the end of your first trimester, maybe at the beginning of your second trimester, and it's nothing too crazy, it's just a blood draw, um, and it takes a few things into consideration along with what they find on that blood draw, the mother's age, the weight, week of the gestation for the child, and it gives you like this, the possibilities of, And it's just a guesstimation of a couple of different, um, genetic disorders.
4:01
Shawnda: And they told me they're like, we don't hear anything from us within a week.
4:05
Shawnda: Everything's fine.
4:06
Shawnda: If something pops up on it, um, we'll give you a call.
4:10
Shawnda: And this was right after we had had the gender reveal online with our family.
4:18
Shawnda: Um, fast forward to Halloween night.
4:20
Shawnda: It was a week if not a little longer after I had had the blood work done and I had completely forgotten about all of it.
4:28
Shawnda: Halloween comes around and I'm literally filling a bowl of Halloween candy, um, just thinking about what Harper was going to be for Halloween the next year.
4:39
Shawnda: I'm just imagining all the different costumes, baby costumes, when my phone rang and it was the OB and I was like, why are they calling me?
4:48
Shawnda: And the next thing I know, someone's on the phone.
4:51
Shawnda: It's not even a doctor.
4:53
Shawnda: I believe it might have been a tech or a nurse who's just telling me, Hey, um, something came back wrong on your quad screening.
4:59
Shawnda: There's a high risk for something called Edwards Syndrome and we're sending you, to genetics specialists and they're maternal fetal medicine specialists and they'll let you know what's going on.
5:08
Shawnda: I said, whoa, whoa, whoa, what, what, what, what?
5:12
Shawnda: And because they just started word vomiting all this stuff that I had no idea what they were talking about.
5:17
Shawnda: And I said, can you please say that again?
5:19
Shawnda: And they said, yes, you have a one in 16 chance of something called Edward syndrome.
5:26
Shawnda: And I said, what is that?
5:27
Shawnda: And they're like, well, it's also called Trisomy 18.
5:29
Shawnda: The genetic specialist will, will explain it to you when you get there.
5:33
Shawnda: So I hung up the phone and I googled it.
5:36
Shawnda: And that is the worst thing that I could have possibly done.
5:39
Shawnda: And that's when our world came crashing down.
5:44
Shawnda: Just say to the poor ball, and I was by myself, Jeremy was still at work that day, and I was sobbing after the things that I wrote, read about on, on Google.
5:55
Shawnda: So, that's how it started.
5:58
Charlotte: what a hard experience, what a hard experience for someone just to rattle that off, very nonchalantly, instead of being like, hey, we're just going to refer you to, a specialty, there's some things that we want them to look over, and let's just make you an appointment and not.
6:14
Charlotte: Literally dump it on you on a phone call with no follow up.
6:18
Shawnda: Yeah, exactly, exactly.
6:19
Shawnda: So it, it was, it was heartbreaking.
6:22
Shawnda: Um, there was no good, I, I don't know if you can have good bedside manner over a phone call, but it was not handled right at all.
6:30
Shawnda: Um, because how you, you, you know that someone's going to Google something as soon as you tell them what it is, you know?
6:37
Shawnda: And, and that's what happened.
6:39
Shawnda: It was just handled terribly,
6:41
Charlotte: you and JEremy get to your appointment, Did they do further testing?
6:46
Charlotte: When was it confirmed that Harper Grace does have Edwards syndrome?
6:51
Shawnda: when we get there to our first appointment, um, we sit with the genetic counselor first, and he goes over our quad screening, and he explains the science behind it, he explains how it comes up with this percentage, or this chance of whatever.
7:06
Shawnda: And, the main diagnosis is that it usually looks for trisomy 21 or down syndrome, trisomy 18 edwards syndrome, or trisomy 13 patou syndrome.
7:16
Shawnda: And I may have said that wrong.
7:17
Shawnda: Um, but and again, he said there's not a lot of to explain science behind it.
7:23
Shawnda: It's a blood draw.
7:24
Shawnda: They look for certain markers in your blood.
7:26
Shawnda: They take your age, um, your gestation age and they calculate the numbers and this is how you get this, um, this possibility.
7:36
Shawnda: And he then went on to explain what some of our other testing options were.
7:40
Shawnda: I started talking about amniocentesis, um, talked about NIPTs, talked about, uh, different ultrasound techniques, all kinds of things.
7:50
Shawnda: And we already knew, I already knew I wasn't going to do an amniocentesis.
7:54
Shawnda: I knew it from the beginning because of the risk of miscarriage.
7:58
Shawnda: And he tried to say, you know, well, the risk of miscarriage is low.
8:01
Shawnda: And I said, it's relative.
8:03
Shawnda: The risk of miscarriage is relative to the family.
8:06
Shawnda: And I said, we already lost our first, so you can tell me it's 0000001 percent of a chance that we're going to have a miscarriage, and it's still going to be 100 percent chance for us.
8:17
Shawnda: Because we've already lost our first kid.
8:19
Shawnda: So it does not matter.
8:20
Shawnda: I'm not running the risk.
8:21
Shawnda: Um, and I said it's not going to change what we're going to do, regardless.
8:25
Shawnda: I knew that I wanted this child.
8:28
Shawnda: She was very tried for, and very wanted.
8:30
Shawnda: Um, No matter how she was born.
8:35
Shawnda: And so we decided to wait on testing until we had our anatomy screening, which was also scheduled for that day.
8:41
Shawnda: So our anatomy scan was pushed up to roughly 18, instead of like 20 to 22 weeks, it was around 18 to 19 weeks.
8:49
Shawnda: Um, we decided to wait.
8:51
Shawnda: To do to decide on testing until we had the anatomy scan, which was a nice long two plus hours of terror just sitting there looking or specifically going in to look for something wrong, especially now that they know there's a possibility, but everything looked great after the anatomy screening was done, the doctor came in and said, um, and this is the only time I ever seen this specific OB, but he said, you know, I truly don't think this child has a chance.
9:18
Shawnda: There are no markers whatsoever on her ultrasounds, and I, I would, even though I know you don't want to, a amniocentesis.
9:29
Shawnda: I'm not going to push one because I don't think this child has it.
9:32
Shawnda: Um, so what we ended up doing was just doing something called a MIT P and noninvasive prenatal testing, which is another blood draw, but they specifically pull the placental DNA that is put back into certain into the mugs of circulation, um, from that blood draw.
9:50
Shawnda: And that's where they come up with, the diagnosis.
9:53
Shawnda: It's a 98.
9:55
Shawnda: 9 percent accurate on Edward syndrome.
9:58
Shawnda: and obviously 99 percent of the time, 99.
10:02
Shawnda: 9 percent of the time, the placental DNA matches the child's DNA.
10:06
Shawnda: So if the placental DNA has this, then 99.
10:09
Shawnda: 9 percent chance that your child also has it.
10:12
Shawnda: So, um, We, we chose the nit tea, it was just a blood draw, and we then go back to waiting again for phone calls, only this time we knew that we were going to have a phone call back one way or the other, whether she had it or not, um, and we waited another two to three gut wrenching weeks, so.
10:33
Charlotte: And how was it when you and Jeremy found out?
10:36
Shawnda: Um, I was by myself again.
10:38
Shawnda: Um, I was still active duty Air Force at the time, and I was actually at PP.
10:42
Shawnda: I was running when I got the phone call.
10:45
Shawnda: So I just stopped and ran into the, the locker room and I sat in the locker room.
10:50
Shawnda: Well, he told me, he said, Shonda, unfortunately, I'm really sorry, but it is positive for 2018 and I lost it.
10:56
Shawnda: I broke down.
10:57
Shawnda: I was sobbing on the floor in the middle of this.
11:01
Shawnda: Locker room at the gym on base.
11:03
Shawnda: Um, and I called Jeremy.
11:06
Shawnda: Um, and he was only like two blocks away from me at his job.
11:09
Shawnda: And I, he's like, okay, come over here now.
11:12
Shawnda: Um, I'm leaving work.
11:12
Shawnda: And I met him in his parking lot.
11:15
Shawnda: And he left for the day.
11:17
Shawnda: And we drove home together.
11:19
Shawnda: And, I said, hey babe, um, I'm thinking, I want my mom.
11:22
Shawnda: He's like, I've already told her to be ready.
11:24
Shawnda: And I've already texted her as soon as you call me to pack her bag.
11:27
Shawnda: She's getting all cold tonight.
11:29
Shawnda: So he had my mom ready.
11:31
Shawnda: To fly out in case it came back that she had it and had my mom there.
11:36
Shawnda: By that night, that evening,
11:38
Charlotte: I can't even imagine all the different emotions when you actually sat down for a consultation, do they have advice?
11:46
Charlotte: do they, go through what this would entail?
11:49
Charlotte: Or they just told you over the phone and then you just had your next OB appointment?
11:54
Shawnda: You mean the first one with the first OB or once we got sent to?
11:58
Charlotte: No, I'm saying you just got a phone call saying that Harper Grace is positive for Edwards syndrome.
12:05
Charlotte: Did you go into the office and they talked to you about exactly what all that really means?
12:11
Shawnda: So when we had the first appointment with genetics, and decided to just do the NIPT, we had went over, it was like a two hour appointment.
12:19
Shawnda: The first like hour was just sitting with the geneticist and talking about what Edwards Syndrome is, how sometimes it can happen.
12:28
Shawnda: Um.
12:28
Shawnda: They also take a long history to, um, health history for your family, both sides of the family.
12:34
Shawnda: But, um, we knew then by the time we left that first appointment, um, what we could potentially expect.
12:43
Shawnda: Um, we knew that we were going to potentially be set up with palliative care, with NICU, with cardiology, all kinds of things.
12:50
Shawnda: And then after, um, the results came back and we had that phone call.
12:54
Shawnda: From then on, I was followed by a maternal pedimatic specialist.
12:58
Charlotte: Okay.
12:59
Charlotte: For a quick overview, what is Edwards syndrome and what is trisomy 18 for general knowledge
13:05
Shawnda: so, most people have heard of trisomy 21, which is down syndrome.
13:12
Shawnda: Um, Harper has trisomy 18, which is Edward syndrome.
13:15
Shawnda: So what it means, the word trisomy, tri means three, somy means chromosomes.
13:20
Shawnda: Trisomy, three chromosomes.
13:22
Shawnda: So, Every person is born with a set of chromosomes for mom and a set of chromosomes for dad, um, a total of, of, of 46 chromosomes, um, two of each individual chromosome.
13:35
Shawnda: And every once in a while, and no idea why it happens, It just completely happens at random during cell division at conception.
13:46
Shawnda: Whenever cells are dividing, sometimes some of these chromosomes, and it can happen on many different types of chromosomes, sometimes, at some point during, cell division, chromosomes can duplicate.
13:57
Shawnda: And instead of having two of each of those chromosomes, you will have a third one.
14:01
Shawnda: And in Harper's case, she has three of the 18th chromosome.
14:06
Shawnda: And that causes severe intellectual disabilities.
14:10
Shawnda: It can cause birth defects.
14:13
Shawnda: It's usually these children are much smaller.
14:17
Shawnda: When Harper was born, she looked like a preemie, but she was full term.
14:20
Shawnda: heart defects, brain defects, other internal organ issues, certain kinds of physical deformities, with the hands and feet, sometimes a cleft lip or palate, and in many, just a slew of health problems that can happen.
14:35
Shawnda: again, though, just like any other diagnosis, it's really a, it's a spectrum.
14:41
Shawnda: Down syndrome is a spectrum.
14:42
Shawnda: Autism is a spectrum.
14:44
Shawnda: Cancer is a spectrum.
14:45
Shawnda: you really just don't know until you have the child of what all you're going to expect.
14:48
Shawnda: You can have an idea with certain types of, imaging.
14:52
Shawnda: We had 3D ultrasounds almost every week for the rest of our pregnancy.
14:56
Shawnda: So, to have an idea of what to expect and really in depth, like, Cardiac ultrasounds while I was still pregnant with her on her heart, so we had an idea about her heart defects, you know, but you truly, you don't know until you have the child what, what is going to impact them.
15:14
Charlotte: Let's fast forward a little bit to delivery.
15:17
Charlotte: what was the plan going into delivery?
15:19
Charlotte: what was the expectation?
15:20
Charlotte: when you got this diagnosis, would she make it to full term, was the pregnancy.
15:25
Charlotte: Going to stay viable, what was delivery going to be like, what was the counseling to lead you up to that point?
15:34
Shawnda: Yeah, so based on statistics, We were cautioned to not expect to get to meet her.
15:42
Shawnda: Uh, statistics say that kids or pregnancies with trisomy 18, 90 percent of those pregnancies will self terminate.
15:51
Shawnda: Or, well, not self terminate.
15:52
Shawnda: 90 percent of children with trisomy 18 will not survive birth.
15:57
Shawnda: That does not take into consideration which ones truly are self terminations versus...
16:03
Shawnda: elected terminations, if that makes sense.
16:06
Shawnda: Um, so 90 percent of kids will pass in utero.
16:09
Shawnda: So only about 10 of them will survive to birth.
16:12
Shawnda: And after that, of the 10 percent that survived to birth, only about 10 percent of that 10 percent will survive to see their first birthday.
16:20
Shawnda: Um, so we knew that the chances of meeting her were slim to none.
16:24
Shawnda: Uh, with that being said, we, we let them know from the beginning that it didn't matter what she had.
16:31
Shawnda: that we wanted her.
16:32
Shawnda: So we were never pushed with termination, which is not always the case.
16:36
Shawnda: Many families that I know are pushed to terminate before they even get confirmation on diagnosis, which I, which is discussing, um, how you can push a family to terminate before you know for sure that they have this issue.
16:47
Shawnda: You know, I don't see how that's ethical, but I digress.
16:51
Shawnda: we're just, basically are given the worst case.
16:53
Shawnda: We're basically given the worst case and we are told to, you know, make plans.
17:00
Shawnda: We already had, we had funeral plans made.
17:03
Shawnda: Um, we had.
17:05
Shawnda: picture plans made for delivery so that we could have pictures of her.
17:09
Shawnda: Um, but on the flip side, we also, we're very type A.
17:14
Shawnda: We want to know everything so that we can have a plan.
17:16
Shawnda: And I wanted to be able to make a plan.
17:20
Shawnda: I knew the type of hole that she had in her heart.
17:22
Shawnda: Statistically I knew what the main issues were that these kiddos face when they're first born.
17:27
Shawnda: Oftentimes it's respiratory and feeding issues.
17:30
Shawnda: And I had met families online that helped me prepare a birth plan for the things that are usually most needed right after birth.
17:38
Shawnda: So that I could be like, Hey, we want option a option B option C ready to go.
17:43
Shawnda: We're not going to have this child and then just let her die, um, which families choose comfort, you know, that's, that's their prerogative and I fully support that.
17:55
Shawnda: But for us, we wanted to give her her best chance at life.
17:58
Shawnda: So I went in with like a nine page, uh, birth plan with every issue that I knew she was going to have, um, uh, talked about what we wanted to be done for that issue.
18:11
Shawnda: And then.
18:13
Shawnda: The possibility of these other issues that she might have what we want to done for those We also talked about what we want to done if she was stillborn And how we wanted or our team to react how we wanted things handled You know We went in with a plan for just about every type of scenario That could be thrown at us because we wanted to give her A chance and we went in with as much research done as we possibly could so that we could have legitimate intelligent conversations with these doctors so that we could advocate for the best that we could.
18:52
Charlotte: How did you feel as a mother, you'd unfortunately already lost, a pregnancy, knowing this was going to be complicated, and it was going to change your life?
19:05
Charlotte: obviously child changes your life in any aspect, but also knowing that you are going to have a child with special needs and no matter what you wanted to have a child but I think it still needs to be said, you're signing up for a more difficult path.
19:25
Charlotte: And did that ever cross your mind even if it's just for a quick, brief moment, okay.
19:34
Charlotte: This is going to be a lot harder than we had anticipated.
19:39
Shawnda: So I think I have always said that I would not be one to terminate for a diagnosis like this.
19:50
Shawnda: Growing up, I was in special ed for learning disabilities, and a lot of the kids that were in my class were individuals that were born with severe, you know, intellectual things, severe physical disabilities, and I've grown up around, you know, some of that, obviously I didn't have a clue what it was like as a child or as a teenager, but I knew that Yeah, I've never had an issue with uniquely abled individuals, individuals born different, because we're all born different.
20:20
Shawnda: You know, I've always known that, so from that aspect, it was a no brainer.
20:25
Shawnda: It didn't even cross my mind to do anything other than what we were going to do.
20:29
Shawnda: Um, but yeah, it is going to be hard when you're truly faced with it.
20:32
Shawnda: Uh, anyone who says it's, it's...
20:35
Shawnda: A walk in the park is lying.
20:36
Shawnda: It's the hardest thing I've ever done.
20:38
Shawnda: But, um, I think I've always looked at it from the perspective of, no one is promised a life free of suffering.
20:49
Shawnda: We have all suffered at some point in our life or another whether it's physical or emotional Everyone goes through hard things.
20:57
Shawnda: It doesn't make that life less valuable or have less meaning and I just knew that it didn't matter to me.
21:09
Shawnda: I love this child and I wanted her exactly how she was and I guess that's really, that's really all I, I knew it was going to be hard.
21:19
Shawnda: I knew it was, but I mean, I, my life hasn't always, hasn't been easy anyway, so why not?
21:27
Shawnda: Let's go for
21:27
Charlotte: I think it's wonderful.
21:28
Charlotte: And I got the unique privilege to be part of your story.
21:33
Charlotte: and what amazed me, is when I first met you, the tremendous heart and love that you have for your daughter, you would go to the end of the earth.
21:49
Charlotte: To use your voice for her and, I know there's been many situations throughout her care you've had to exercise that voice and, and how important that really is.
22:03
Charlotte: And how much a part of your journey, is advocating for her to have the best possible care because here's.
22:11
Charlotte: Ms.
22:11
Charlotte: Harper Grace, six years old,
22:15
Shawnda: Yes, she is six year old.
22:16
Shawnda: Absolutely.
22:17
Charlotte: statistically, she was not even supposed to maybe take her first breath and, I got the honor and privilege of taking care of her in the hospital for many months and, seeing her discharged and, as she's grown up over the years and how remarkable it is that you did exercise Your voice to save her and to, continued with her care that at six, she's still here with us.
22:45
Shawnda: Yes, yes, and she's doing amazing.
22:47
Shawnda: You know, I just think about, so I've talked about the statistics surrounding Trisomy 18 this entire time.
22:56
Shawnda: Um, it's statistics, statistics, statistics, and we constantly have statistics thrown at our faces.
23:01
Shawnda: Um, obviously when we lost our first child, the statistics surrounding miscarriages and the chances of those, of that happening.
23:08
Shawnda: And then the statistics of having a child with Trisomy 18, how rare it is, and then how rare it is that they survive.
23:15
Shawnda: Okay.
23:16
Shawnda: Let's stop for a second.
23:17
Shawnda: Let's take into consideration that Um, science is changing, medicine is changing, and one of the things I have always said is what was impossible yesterday is completely possible today, and by tomorrow, it's going to be old news, because science and medicine is advancing so rapidly, but I can never wrap my head around how some situations, certain diagnoses, some people hold on to this outdated mindset, and honestly, in my opinion, um, can sometimes be a very eugenics mindset around certain diagnoses.
23:53
Shawnda: I just believe that, we are on the forefront of a genetic revolution in terms of exactly what I just said.
24:03
Shawnda: What was impossible yesterday is completely possible today.
24:06
Shawnda: 50 years ago, individuals with Down syndrome were, had very much similar life expectancy.
24:12
Shawnda: As kids with Trisomy 18 do today, they weren't expected to live more than a year or two.
24:18
Shawnda: And if they did, they weren't institutionalized, never thought of again.
24:21
Shawnda: And now we have individuals with Down syndrome going to college, speaking on the floor of Congress, owning their own businesses, you know, leading amazing, fulfilling lives.
24:32
Shawnda: Now I'm not saying I expect that to happen with Trisomy 18.
24:35
Shawnda: It's very different.
24:37
Shawnda: My point is, is that More and more research is starting to show that hey, what we thought was impossible isn't as impossible as we thought it was with a little bit of help.
24:49
Shawnda: So for example, um, heart repair.
24:53
Shawnda: There was a study that was released by Stanford University in 2017, the same year we came home from the hospital with Harper, um, about heart repair and it looked at heart repair for kids with trisomy 18 and trisomy 13.
25:05
Shawnda: And the statistics were Like they were astounding and mind blowing because these kids, they looked at kids that were born that, um, who, who would survive to go home from the hospital with heart repair and without heart repair, without heart repair of the kids that were born alive.
25:22
Shawnda: Um, only about 20 percent of those that they, of their pool of samples 20 percent maybe, maybe 30 percent survive to leave the hospital without heart repair.
25:35
Shawnda: But, excuse me, with heart repair.
25:37
Shawnda: They survived to leave the hospital and through two years of follow up at a rate of 68%.
25:46
Shawnda: That's, that's huge, Charlotte.
25:48
Shawnda: Like, that's a huge number.
25:51
Shawnda: That's a massive, you know, increase in survival rates.
25:54
Shawnda: And if you were to look at me and tell me that, knowing what we, what we went through, looking back, if I had to do it over again and be told that we would only get those two years of follow up, I would still do it.
26:06
Shawnda: I would still do it in a heartbeat, but to hold on to these old mindsets that it's impossible so these hospitals are just denying basic human rights like feeding tubes and oxygen or alone heart repair, you know, we've got to start fighting for these kids and using our voices because It's possible.
26:23
Shawnda: It's possible.
26:24
Shawnda: And we're starting to see more and more kids survive.
26:26
Shawnda: Even in just the last two or three years, more locations willing to do heart repair, more locations willing to give them feeding tubes or give them oxygen when they're born.
26:37
Shawnda: Um, and that I think Having to fight for that change when change is so possible and not let people hold on to those outdated thoughts and statistics.
26:47
Shawnda: Does that make sense?
26:48
Shawnda: You have to be afraid not to stand up.
26:50
Shawnda: You have to be afraid not, uh, to not, to use your voice.
26:54
Shawnda: You have to use your voice if that's what you want.
26:56
Shawnda: This is your child.
26:56
Shawnda: No one else is going to fight for them.
26:59
Charlotte: Did you have to fight for Harper's heart surgery?
27:02
Shawnda: I had to advocate for it very, very hard.
27:05
Shawnda: Um, I told them from the beginning that we wanted it.
27:09
Shawnda: And I will say that some of, you know, some of the doctors were like, yeah, you know, does not deny heart repair specifically based on Trisomy 18 alone.
27:19
Shawnda: Um, We allow heart repair if the child, regardless of diagnosis, can meet a certain set of criteria, which I agree with.
27:26
Shawnda: I do agree with that.
27:27
Shawnda: I don't believe in denying anything based on a diagnosis.
27:31
Shawnda: Um, but we did have, um, one or two individuals look us straight in the eye and say, doesn't matter, why, why are you gonna do this?
27:41
Shawnda: It's not gonna help.
27:42
Shawnda: It's not going to change anything.
27:43
Shawnda: It only runs a risk of infection.
27:45
Shawnda: She's going to die anyway.
27:47
Shawnda: Um, Look me dead in the eyes and say that.
27:50
Shawnda: Yes, I did.
27:50
Shawnda: And, um, you know, I
27:53
Charlotte: handle that?
27:55
Shawnda: um, well, at the time I was, that was said to me when Harper was two weeks old, and I'm still very much recovering from a C section.
28:04
Shawnda: I'm exhausted.
28:05
Shawnda: I'm tired.
28:06
Shawnda: I'm scared.
28:06
Shawnda: I still don't know a whole lot of stuff.
28:09
Shawnda: Um, and I was livid.
28:12
Shawnda: I was absolutely livid.
28:13
Shawnda: Um, but I did not react the way that I would have today.
28:20
Shawnda: Today I...
28:21
Shawnda: Metaphorically, I would have flipped a table, of course, but I would not really flip a table, but it would have been a very different conversation between me and that doctor.
28:29
Shawnda: And probably, um, his superiors or something like that.
28:33
Shawnda: I would have had a very different conversation, but then I just, like, said, well, I don't agree with you, and we left, so, um, And I continued to just go to those who I knew were willing to give me support.
28:43
Shawnda: So,
28:45
Charlotte: And then she was able to get her surgery.
28:47
Shawnda: she was, she was, and she's now six years old.
28:50
Shawnda: And, you know, On top of that, some of the issues that were caused from her heart defect, pulmonary hypertension, high blood pressure in the lungs, that is fatal if left untreated.
29:01
Shawnda: Um, and she had it.
29:02
Shawnda: She had the pulmonary hypertension, um, but it has since resolved and it has completely gone away, which you don't always hear about that.
29:11
Shawnda: Um, but it has, like all of the issues surrounding her heart, um, and, and the health issues that that caused were taken care of when she had her heart repairing.
29:20
Shawnda: It was life saving.
29:21
Shawnda: It was truly a life saving surgery.
29:23
Shawnda: She would not be here today.
29:25
Shawnda: She was an active heart failure right before she had surgery.
29:28
Shawnda: So had she not had her heart surgery, she would be dead today.
29:32
Charlotte: Remarkable.
29:33
Shawnda: Yes.
29:34
Charlotte: remarkable.
29:36
Charlotte: How long was she in the hospital when she was born?
29:40
Shawnda: 162 days.
29:42
Shawnda: Five and a half months.
29:43
Charlotte: Five and a half months.
29:44
Charlotte: how did you adjust, to life at home from the hospital as far as, bringing a baby home, bringing a post NICU baby, a post cardiac baby, having, Feeding tubes and adjusting to what your new normal was.
30:03
Shawnda: Well, I'm a big believer in, in parent education, parent practice.
30:10
Shawnda: Um, should we caveat that I've since gone to nursing school, so what's one of the reasons why?
30:16
Shawnda: So I am, I, I was so successful, our family was so successful at home.
30:23
Shawnda: Because of the education and the training that individuals like you gave us, um, helping, allowing us to be so hands on with her in the hospital, um, helped us be successful.
30:36
Shawnda: I was not scared of her feeding tube at home.
30:39
Shawnda: I was not scared of her oxygen or her pulse ox or, um, anything that might occur because I was able to be so hands on in the hospital.
30:49
Shawnda: Um, now I'm not going to sit there and say that I wasn't scared.
30:51
Shawnda: I was terrified.
30:52
Shawnda: Especially...
30:54
Shawnda: With the medication post heart repair, she was on some of the stronger paralytics and those opioids and and medications for much longer than a standard.
31:06
Shawnda: So we had to continue her weaning from these opioids at home.
31:11
Shawnda: Um, and that's, that's a lot, you know, it's a lot.
31:15
Shawnda: And I remember.
31:18
Shawnda: We got home, we're doing good, day two, day three, I thought I messed up this opioid.
31:23
Shawnda: And knowing that opioids can cause respiratory distress, um, and or failure.
31:28
Shawnda: And, um, I can remember getting on the phone like, oh my god, oh my god, oh my god, did I mess up?
31:33
Shawnda: Oh my god, is my kid gonna die because I, you know, gave this med, I don't even remember what it was I messed up on.
31:39
Shawnda: But, and I don't know that I even actually messed up on it.
31:42
Shawnda: But, you're scared,
31:43
Charlotte: It's just the fear, the fear of I'm taking care of this baby now.
31:46
Charlotte: And it's all on me.
31:47
Shawnda: Yes, and we very much had like a little makeshift ICU set up in our house for almost a year after she came home and we still have that equipment, but she doesn't need it now.
31:58
Shawnda: But yeah, for our first year at home was very much like a little makeshift ICU set up.
32:03
Shawnda: We didn't leave the house.
32:05
Shawnda: Um, and other than for necessary appointments, um, for fear of her getting sick, catching something, illnesses for kiddos like her are very hard.
32:16
Shawnda: Um, as you know, she's landed in the hospital a few times over the years from the common cold, but, um, we just had our own little sanctuary at home and the three of us just kind of hunkered down and went to battle, so to speak, for the next year until she got stronger and bigger and, and, and healthier.
32:37
Charlotte: And so going forward.
32:38
Charlotte: If we're talking statistics, Harper's outlived, most of those, have you found it challenging to coordinate her?
32:48
Charlotte: Her care, since not as many kids survive, as long as she has,
32:56
Shawnda: Now, no, actually, I believe that individuals in the medical community, if they see a kid that's at this age, she's proved herself at this point, you know, um, they can see that.
33:08
Shawnda: Okay.
33:09
Shawnda: She's BP statistics.
33:10
Shawnda: She's very well managed.
33:12
Shawnda: I have not run into anyone not wanting to provide.
33:17
Shawnda: care or the appropriate treatment in years.
33:20
Shawnda: It's been years.
33:22
Shawnda: And I think the general consensus is like at this point she's proved herself.
33:27
Shawnda: Um, this isn't one of those lost cause cases.
33:30
Shawnda: Now it's people I think wanting to protect their investment.
33:33
Shawnda: If that makes sense.
33:35
Shawnda: I, I know that's, I don't, that's a rough way to look at it, but it's, it's true, you know, at this point, people have invested a lot of time.
33:42
Shawnda: So the members that are on her team that have been on her team for years, um, are very much protective of her and what she has done and our, our family in general, but, uh, I think now too, um, And I've noticed it since we've now transitioned our care up to Cincinnati.
34:01
Shawnda: Um, it's very much a forward thinking hospital.
34:06
Shawnda: Um, everyone is pro support here that I have ran into up to this point.
34:10
Shawnda: Um, And I'm not going to say that they have all the answers or that they know everything because it is rare to see kids her age.
34:21
Shawnda: There are much fewer and further between now.
34:24
Shawnda: We have individuals all the way up into their 40s with trisomy 18 that we know.
34:28
Shawnda: Um, that's rare though.
34:30
Shawnda: We're going in the right direction, you know, so.
34:33
Shawnda: Um, I think, though, if someone were to deny her something now, with the knowledge that I have gained over the years, um, and just the hide, if you can hear her, she's singing to us, the tough hide that I have built now, um, oh man, I would probably end up making it a national news story somehow, if I could, if someone tried to deny her care, just It's just not right.
34:58
Shawnda: We're not, we're not God and we don't have the right to, to, to deny or try to push someone's life in one way or the other.
35:06
Shawnda: We've been very blessed and very lucky to not have to get to that point in a long time, you know.
35:11
Charlotte: So how are you?
35:12
Charlotte: I know that, it hasn't been an easy road.
35:14
Charlotte: And like you said, in life, everyone struggles some, but how do you take care of you being a mom's hard just in general, but then having a special needs child, it's taxing physically, emotionally, mentally.
35:28
Charlotte: how do you take care of you?
35:30
Shawnda: So, um, I was actually diagnosed with PTSD after we got her out of the hospital, which I knew I had it.
35:36
Shawnda: I mean, I'm a military individual.
35:38
Shawnda: I know the signs and symptoms of PTSD.
35:40
Shawnda: It's shoved down our throats from the beginning.
35:43
Shawnda: Um, To take care of ourselves, you know, with post World War Two era and what was called shell shock back then and the lack of treatment.
35:50
Shawnda: We know what PTSD is.
35:52
Shawnda: Um, and I knew I had it.
35:53
Shawnda: And, um,, I have been in treatment for PTSD since about 2018.
35:59
Shawnda: Um, and I think that's something That a lot of people, they don't talk about, or they don't really realize some of the things that families like ours have had to deal with, some of the things we've had to witness, things that no parent should ever have to witness, um, and, you know, being in Open Bay ICUs, um, seeing And being open to others who, um, can use this information, too.
36:20
Shawnda: Thank you so much for your time, Karen.
36:20
Shawnda: So let's get into the facebook live now kidney vigil.
36:21
Shawnda: This is the Turning Point Live, where we interview our panelists, and Not just what I went through, but watching some of the things that other families went through are things I'll never be able to get out of my, my head, you know, never be able to unsee or unhear some of these things.
36:33
Shawnda: Um, but I am proud to say that, while yes, I do have PTSD.
36:39
Shawnda: That I've had a handle on it the entire time, anxiety, you know, I sought treatment for it very early on so that it didn't get out of hand, but I'm doing really pretty well, and I hope, I would hope that other families, you know, who have had to witness this, That type of thing, you know, witness their child code, witness another family lose their child, um, would get the same help.
37:06
Shawnda: So, I'm well and I always try to encourage other families that are newer in this road to get a jump start on their own mental health care.
37:19
Shawnda: It's just from personal experience, you know, I know the horrors that I've seen and the things that I can never unsee.
37:25
Shawnda: Um, and I don't want other people sitting in that.
37:28
Shawnda: I don't want other people marinating in that, so to speak, because it.
37:33
Shawnda: Is deadly.
37:34
Shawnda: Is deadly for their mental health.
37:37
Shawnda: It can be deadly for them.
37:38
Shawnda: It can be deadly for their children.
37:40
Shawnda: Um, so I, that's one of the things I like to talk about with other families is how are you, um, how is your mental health?
37:49
Shawnda: How is your marriage?
37:51
Shawnda: And, you know, other than that, I just try to share Harper's story with the world and I try to encourage other families to, if they want to take on this life to, you know, try to teach families how to advocate, um, how to research appropriately, finding, you know, legitimate.
38:10
Shawnda: sources to research and things like that.
38:14
Shawnda: aNd right now I'm just kind of just basking and living in a life that we did not think we were going to get.
38:22
Shawnda: Um, a life that I'm very grateful for and blessed to be able to live now with Harper.
38:28
Shawnda: And not take any day for granted because the other reality is that we know that we do not have as long with her as someone else may have with their child.
38:39
Shawnda: So just trying to not take any day for granted.
38:44
Charlotte: which I find remarkable, knowing you being a part of her care, but then also following your story of how Brave you are, how resilient you are, having so much love in your heart for her, for yourself, for your marriage and then having the wherewithal to know that when you're struggling, to reach out for help.
39:06
Charlotte: You touched on PTSD, but also if it's hey, I just need to go for a walk around the block, you know, or, Jeremy, you're home tag, you're it.
39:14
Charlotte: I'm just going to go walk around target for a second, and being able to fill your cup so that you can take care of Harper Grace and give her the best quality of life that you can.
39:26
Charlotte: She
39:27
Shawnda: Oh, absolutely.
39:28
Shawnda: We both, like Jeremy is on a short little weekend golf trip with a couple of our friends from South Carolina right now, um, and my best friend is coming up from South Carolina so yes, we, we are very much, um, good about relieving each other, if that makes sense.
39:46
Shawnda: Um, you have to, you cannot, this, this job, it, it's, you, parenting, being a mom is different from being a caregiver.
39:56
Shawnda: They are not the same thing.
39:57
Shawnda: It will never be the same thing and same for being a dad and a caregiver of a child with medical needs.
40:02
Shawnda: And you cannot, cannot do it without some sort of reprieve, um, and, you know, Having a good support system, and even when we were in the hospital, having people that you can count on, like, people that you trust to love your child like your own, good nurses, so important.
40:24
Shawnda: Um, and we were fortunate enough, for the most part, to have that at home too, we had two phenomenal nurses at home, that we trusted enough to be able to go out, um, that I trusted enough to be able to go to nursing school, you know, that I trusted enough to be able to, For a very short time, um, go work at the Children's Hospital um, to be able to go for a walk.
40:46
Shawnda: Um, you have to have a good support system, you know, um, and working out physically.
40:53
Shawnda: Harper is growing, she is large.
40:56
Shawnda: She's very, I say large, she's a, she's six years old, you know, she's getting
41:02
Charlotte: is tall or I say long.
41:04
Charlotte: I remember I picked her up and I mean, I'm not a tall person, but I was like, Oh my gosh, I'm going to drop her.
41:11
Charlotte: her legs get past my knees.
41:13
Charlotte: When I hold her, She is so big.
41:15
Charlotte: And like you said, working out from a physical standpoint Of moving her, of lifting her.
41:20
Charlotte: You just don't think of all of these things.
41:23
Charlotte: And, um, of how important that is to take care of your physical wellbeing.
41:28
Shawnda: Yes, and that's something, you know, I don't want this to come off sounding judgmental because I'm not because each family is on their own walk.
41:36
Shawnda: Each family has their own life and their own battles and their own struggles, but so often, um, you see kids that, Just their families are not in the health to be able to care for them in the way that they need to be.
41:51
Shawnda: And so these kids are often bedridden 23 hours a day, you know what I mean, if not more than that.
41:57
Shawnda: Um, and I don't want that life for Harper.
41:59
Shawnda: But in order to not have that life for Harper, I have to take care of myself and same with Jeremy.
42:03
Shawnda: You know, we are constantly working out, trying to make sure that we can continue to keep up with her weight and her size.
42:10
Shawnda: So that we can lift her and keep her from being in the bed.
42:13
Shawnda: all day so that she can continue to get exercise herself.
42:16
Shawnda: But it is also such an important mental release, you know, running, biking.
42:22
Shawnda: I love my Peloton.
42:24
Shawnda: I love riding that bike.
42:25
Shawnda: Um, I love lifting weights.
42:28
Shawnda: Um, one, because I like to feel powerful.
42:30
Shawnda: I like to feel strong.
42:31
Shawnda: I don't want to sit here and just be like some little, you know, Wisp of a thing that gets blown away.
42:37
Shawnda: I also want to be able to truly care for my child.
42:40
Shawnda: And if necessary, fight for her, you know, and that's not just mental, it's physical, but also mental, you know, and you fight for her mentally, I fight for her physically, and in order to give her the best life possible, you have to take care of yourself mentally and physically.
42:55
Shawnda: Oh, yeah.
42:56
Shawnda: Mm
42:57
Charlotte: Yeah.
42:57
Charlotte: I think it's such an important lesson for.
43:00
Charlotte: Families with medically complex kids that, you can get depleted real quick if you, if you don't create some kind of support system or some kind of true holistic health care that addresses all aspects of your health so that you can.
43:17
Charlotte: Take care of you and her.
43:20
Shawnda: Yes, it is.
43:21
Shawnda: It's so important and I think it's often, I mean, I see it all the time with all of my friends that have kids like Harper like We are the first things to go down because we are just giving, giving, giving, giving, giving, giving from an empty cup.
43:34
Shawnda: And I mean, I've been guilty of it myself too, but, um, of, of going past my means.
43:40
Shawnda: Um, and sometimes we have to, sometimes we don't have a choice.
43:44
Shawnda: We have to, but whenever possible, you know, one of, I love sitting and reading my Bible.
43:49
Shawnda: I love going to church.
43:51
Shawnda: I love working out and I love, um, taking walks and those things.
43:56
Shawnda: Um, or even if it's just, Hey babe, I'm going to go get in the bathtub.
44:00
Shawnda: Give me half hour.
44:02
Shawnda: That does wonders for someone to not have to worry about drawing up medication or starting a feed, um, or putting on AFOs or something.
44:11
Shawnda: You'd be amazed at what something like that can do, which you know, you know.
44:16
Shawnda: A hot shower was amazing when you, during your NICU days, I bet.
44:21
Charlotte: yes, it was.
44:21
Charlotte: Yes, it was.
44:23
Charlotte: Shonda, thank you so much for coming on and sharing your story, sharing Harper's story, and letting people know the power of a voice and how important that is to, The welfare of your child and how to truly, stand up and advocate for something that you truly believe in.
44:40
Charlotte: And, I really appreciate you, taking the time today.
44:44
Shawnda: Hey, can I, can I plug, shameless plug Harper's page?
44:47
Charlotte: Okay, sure.
44:48
Charlotte: Go for it.
44:49
Shawnda: Harper's page, it's a Facebook page.
44:50
Shawnda: It's just facebook.
44:52
Shawnda: com slash HarperGraceT18.
44:56
Shawnda: The number one eight.
44:56
Shawnda: Okay.
44:57
Charlotte: T 1 A T.
44:57
Charlotte: And you know what?
44:58
Charlotte: I will, put a link to that in the show notes
45:01
Shawnda: well, thank you.
45:02
Shawnda: Yeah, we try, I try to share her page.
45:03
Shawnda: Um, or I try to share a life with her.
45:06
Shawnda: Um, I don't sugarcoat it.
45:07
Shawnda: We're not one of those overly polished looks like a perfect social media family.
45:11
Shawnda: I share, or day it is.
45:13
Shawnda: I usually look homeless'cause that's what I, you know, listen, I'm taking care of her.
45:17
Shawnda: But, um, I do, I just try to share things that go on with her.
45:20
Shawnda: I keep, I'm honest, honest about her life or life
45:25
Charlotte: Well, it's creating awareness.
45:26
Charlotte: It's creating awareness of Trisomy 18.
45:29
Charlotte: It's creating awareness for truly what's involved in taking care of a complex, medical kid.
45:35
Charlotte: And I think it's important and it validates your love for her.
45:40
Charlotte: And, we greatly appreciate you sharing your story with us.
45:44
Shawnda: absolutely.
45:44
Shawnda: Thank you for having me.
45:45
Shawnda: It was great seeing you as always.
45:47
Charlotte: Of course.
45:48
Charlotte: Thank you.
45:50
Charlotte: I appreciate you spending this time with me until next time, keep sowing the seeds of love in your life and those around you.