A Mother’s Legacy: Jackson’s Story | Becky Jackson Curran
In part 2 of My Hero 360’s conversation with Becky Jackson Curran, she shares the story of her son, Jackson, whose life was tragically cut short. Becky and Jackson were both born with achondroplasia, a form of dwarfism. At 6 months old, Jackson suffered a medical emergency that resulted in his death. Becky talks about Jackson’s impact and her advocacy work to ensure that all people receive the best, most informed medical care. Through remembering Jackson, Becky reminds herself of her own strength, pushing new limits and carrying Jackson’s legacy forward.
Kerri Fitzgerald:
I’d like to talk about your son, Jackson. He was also born with achondroplasia. What’s he like? Tell me about Jackson.
Becky Jackson Curran:
The most amazing baby on the planet who had a very short life, but he’s still here in spirit.
I got to meet Jackson about two and a half hours after he was born, because I had had general anesthesia with my C-section, and it was important for me to make sure I could be as alert as possible for when I met him for the first time. I was rolled into the NICU where he was, because even though he was born at 39 weeks and a day, which is considered relatively full term, he was struggling with his breathing. I think because of the diagnosis of achondroplasia, they were also closely monitoring his vitals.
When I got to hold him for the first time, it was magical. It was amazing to finally get to that point where I accomplished the most important title in the world. Holding him just got me so excited for what was ahead. I definitely felt that we were faced with every challenge possible from day 1, but there was nothing we couldn’t do. I think that mindset comes from the way that I was born.
Jackson Robert Kekula is his full name, and he got that name because Jack is my father and someone who I deeply admire and respect. Jackson makes his name a little bit more unique to himself. Robert is Jackson’s father’s father’s name. We thought that was a great way to honor both of our fathers. Kekula is Jackson’s father’s last name, and it was just a strong way to present him to the world. Maybe someday we’d call him JR. Maybe someday we’d call him Jack. Some of the nurses started calling him Jack Jack. You do whatever you can to imagine all of the beauty that lies ahead together.
It ended up being 23 days that he was in the NICU. You never know when the discharge is going to be, but the nurses said, “The school bus doesn’t come to the NICU, so you’re going to get out of here eventually.” He was on an antibiotic from day 1 because of hydronephrosis, which was diagnosed before he was born, which is a narrowing of the tube from the kidney to the bladder. That’s common among males, and it also is something that can be fixed if it becomes a continuous issue, but something to closely monitor.
Then we needed to figure out how he was going to pass the car seat test. He also had an MRI to check to see how the pressure of the spinal column was up against the cord, which is common with babies with achondroplasia. Because we have larger heads, our necks are working twice as hard to try to keep that strength up. He was a newborn baby. He wasn’t going to have that strength right away. Having him in the NICU for 23 days was challenging, but it was also a way for him to develop a little bit until we took him home.
Although he didn’t end up passing the car seat, we were given a car bed, where you can lay him down in the back seat of a car flat, so it wasn’t going to compromise his breathing or his neck control. Then after we left the NICU, I had a yellow sheet of paper with every single appointment I needed to make. We were discharged from the hospital at about 4 PM, had to stop at Walgreens to get the amoxicillin, then get to the house in order to meet the oxygen company. Jackson definitely needed oxygen for sleeping. Sleep apnea is common among babies and people with dwarfism because of the narrow airways.
Got the oxygen people, got him set up. It was still during the pandemic when he was born. He was born on August 9, 2021. We got out of the NICU September 1, and did whatever we could to keep him safe and protected. While we were in the NICU, the reason that it was determined that we did need to go home with oxygen, we were transferred to another hospital to do a sleep study. It was determined that he had sleep apnea. We brought home the oxygen. He was sleeping so much, it made sense to just keep him on the oxygen 24/7. Because of the oxygen, we were assigned to a visiting nurse.
Then it was recommended that we do early intervention. Early intervention probably came about a month after to do their assessment. They came to the house where we were living to do the initial assessment, and it was 4 people. They had 4 different cars because of the pandemic. They couldn’t all travel together. The neighbors across the street thought there was an emergency, so they called me and asked, “Is there something wrong?”
Everyone had known about Jackson. Not many people had met him because of just trying to keep him safe, but they were really concerned that there was an emergency. I said, “Don’t worry. It’s just an assessment for early intervention. There’s not going to be 4 people every time. Thank you for your concern.” Then about a week later, grocery delivery came. Again, because it was late at night and there were lights, they were panicked. I said, “It’s okay.”
Kerri Fitzgerald:
You have some great neighbors.
Becky Jackson Curran:
It was like “The Boy Who Cried Wolf.” Yes, they were absolutely amazing and super supportive. It was tough because it was still tough times. We didn’t know how compromised his health was or could be because of the oxygen and the extra precautions. It was hard to socialize and show him off as much as I would have liked to.
With early intervention, I think this is a big determinant of how hard Jackson worked while he was doing early intervention. It’s wild watching the interaction. The specialist is just kind of helping him figure things out, play with toys, do tummy time. Then all of a sudden, when she’s gone, in between appointments, it’s like he’s studying his tummy time. He’s trying to figure out how to get himself to do the things that they were doing together.
Kerri Fitzgerald:
He’s determined like you are.
Becky Jackson Curran:
Exactly. That’s just something that stood out so much, like watching that determination. Sometimes he would get himself stuck and he’d be like, “Eh, eh.” I’d go and get his arm out of the way or help him get repositioned. But to watch at such a young age how hard he tried, I just knew that there was so much greatness ahead.
Because he was determined to have sleep apnea, during the sleep study that we did in the NICU, he was then scheduled to have another sleep study 3 months later. That was, what I thought, a successful sleep study because I didn’t see the people who were administering the study add any extra oxygen throughout the night. They did a car seat test and then they did the sleep study at once.
One thing that I don’t love about what hospitals do, even though they’re trying to help families, is they try to bunch all the appointments together so people don’t have to travel in and out of the city multiple times a week or month or whatever it may be. I truly believe that a car seat test should probably be done in a lit-up environment versus a sleep study dark environment.
Everything seemed fine. We get to the follow-up appointment 3 weeks later. What happens with the sleep study and car seat test is they tell you, “You’re done,” and they’re not allowed to read the results to you right there. You go home and wait 3 weeks, have the appointment. Of course, we get to the appointment, and we’re told he still has sleep apnea. He failed the car seat test. Schedule for another 3 months.
During that time, we were staying on top of all the different doctor’s appointments. There was a speech therapist just to watch his feeding, but I did go to 1 appointment where they wanted to watch how I feed him. As an adult with dwarfism, I didn’t have the proper setup to feed him like I did at home, so that then impacted his results, and they though that he needed to go down a level in the nipple that he was using for the bottle. But because we had an early intervention specialist and a nurse at home who thought he was doing great on the nipple that he was on, we decided to just keep the path we were on because it also was because of the setup I had.
We got to the 6-month point. One thing that I am forever grateful for is we did family photos once a month for his first 6 months and just to be able to have those memories captured. I think at first I was thinking, “That’s really expensive if we do it every month for the rest of our lives.” Looking back, I’m grateful that we have that content. I did do that one-second-a-day video app where I got a second either video or photo of him every single day of his life.
We got to the 6-month point and had the sleep study and car seat test scheduled. Earlier that day, we had an appointment to monitor his hydronephrosis. The day before, we had an appointment for his ears. His eardrums weren’t moving, so most likely he was going to need ear tubes. He was going to need surgery for the hydronephrosis. May or may not get off the oxygen after we find out the car seat and sleep study results. But we were feeling hopeful, thinking that, “Maybe this is the time we can finally put him in a regular car seat and maybe we’ll get off the oxygen.”
But we got to the appointment. After the urology appointment, we had a few hours to spend in just the family center of the hospital, and we were told to go…instead of the sleep study area of the hospital, we were going to go to the overflow oncology unit of the hospital. I was thinking, “Aren’t we here for a sleep study? Why are we told to go somewhere else?” It was because they had too many booked.
They send us there. We get set up. Jackson was born in August. From October on, we had him on a pretty tight sleep schedule of 11 PM to 7 AM. For these sleep studies, they set you up at 7:30 and they want the child to go to bed so they can start the study because they kick you out of there at 6 AM. I was trying to feed him and get him to rest.
Of course, he would take little naps throughout the day, but they definitely weren’t happening at that time every night because we were trying to keep him awake so then he’d sleep through the night. I got him ready and the people around us were acting very rushed, and we got him set up. They put on the headdress for the sleep study and then they were going to put him in the car seat test to do that first.
I don’t know if I just didn’t notice it as much in the previous experience 3 months prior, but I found it very strange that we were going to put heavy tubes and cords on his head and then expect him to have a strong neck in the car seat. When you want to trust medical professionals because you hope they know what they’re doing, you let them lead the way.
We got him set up in the car seat. It was actually set up in a bed, like a hospital bed that was higher than I stand. I asked for a step stool, which they were willing to provide, but it wasn’t really conducive to one that I would feel safe using. I was put on an ottoman over to the side. He was supposed to do the test. All the tubes and machines were being monitored from the back room. Because I had mentioned that we weren’t in an actual sleep study room, I didn’t even know where the back room was.
I can’t hear anything. At home, if a buzzer is going off, he probably ripped his oxygen cord off and I just need to get out of bed and adjust it. But there, I had no clue what was going on, except for people came in after he fell asleep. He was definitely making like a blood-curdling scream-type noise, but I thought it was just he didn’t want to go to bed and he was so tired. But it was really that he didn’t fall asleep after he stopped crying. He stopped breathing. It was for 20 minutes at least.
We were told in the NICU, “Check the patient before you check the machines.” The opposite happened in this scenario. People came in and they were playing with everything. I even said, “I saw that you have the pulse ox monitor just on his little toe. Are you sure that’s really going to get a good reading? We’re used to putting it around his foot back at home.” They just were like, “Good idea.”
But they didn’t really run with that idea because they already knew that the mistake had happened. Ultimately, they called code. Code took 4 minutes to get there. I was pushed out of the room to a room across the hall. Jackson’s dad was already at the hotel because you cannot have 2 people stay for the sleep study at the hotel.
Hadn’t even taken his shoes off. I called him right away. I said, “You should probably come back.” We waited about an hour or so in that room, not knowing what had happened. They finally told us that he got to the ICU, breathing tube, feeding tube, heart rate revived, breathing revived with support, but no other quality of life. The night that I was in the ICU with him, I was just on this little bench. It almost felt like a sun bench.
I definitely felt some bladder issues because I think it was just the nervousness. I was anxious and the bathroom was not in the room where we were because it was just like an open-air space. I just kept getting up and going to the bathroom, back and forth. I was also strategizing, “How can I run into the medical professionals and see if they have any updates or answers? Do they know things I don’t know?”
I remember 1 of the residents looking at me in the eyes and he had tears going down his face. That’s when I knew it was really bad, because when ICU professionals who’ve seen the worst of the worst are crying, this isn’t good. His name was actually…his middle name or last name was Jackson. I could tell that he had felt that extra connection.
Long road ahead. I woke up in the morning after not sleeping at all. He appeared to not be doing well, but at the 72-hour mark, because if there’s a brain injury, brain injury from lack of oxygen, at the 72-hour mark, they know kind of how bad the damage is. At the 72-hour mark, a physical therapist came into the room. She lifted his leg. It just fell to the back on the bed.
I knew that she wasn’t coming back because there was nothing she could do. Started decorating the room like it was our own, and put pictures, did whatever I could, asked Child Life, “What’s every activity I can do? Let’s do footprints. Let’s do all these things.” Jackson’s dad really wanted to make sure that we had a baptism, so we had the baptism folks come in or the pastoral services. I was in denial, thinking, “Aren’t we going to just do this at home? We’re going to do it at home.” But to make me feel better, they said, “You can do it here and you can do it at home, too.”
A bunch of the professional photos we had put up on the wall. They said, “See that over there? You’re not going to see that smile ever again.” I thought, “Wow. All right.” “Maybe the most you’ll get is his hands and feet moving a little bit like this. But if you choose to go home with him, you’re going to need the trach, the feeding tube, the 24-hour nursing, all the things. There’s no guarantee that he’s not going to get pneumonia and pass from that.” Dealing with all that, every single day we were in the ICU, it was a total of 12 days. We also had to face the truth of a massive accident happened that could have been prevented and shouldn’t have happened.
“How do we give him the best care possible until we make the decision of what’s next? How do we find out what the hell happened?” That was really hard to balance those 2 things each day. We asked for several MRIs, just to constantly find out how bad the brain damage is. At the final MRI, we saw the brain mass was disintegrating, but we still saw that cute little achon face on the wall and couldn’t help but smirk a little bit. I really wanted to hold Jackson. I saw that he was in the crib and it was really hard for me to access him.
One of the days I said, “Can I just hold my baby?” They set up a bench so I could sit and hold him. Because I was very stressed and having bladder issues, I needed to get up and go to the bathroom. Then our moment together was impacted because I needed to go. Then the next day they decided, “We can put him in just one of those Stryker beds because he’s not moving. We’re not going to worry about him falling off the bed because he’s really not moving. Then you can get in bed and hold him and be with him.”
It wasn’t going to be risky. There were still sidebars that we could put up to make sure that he was extra safe. Then that allowed me to use a step stool and get on the bed and just be with him all day, every day. It really made a difference because I got to just lay with him, read him books. They say that he wasn’t brain-dead and it was an opportunity for me to just spend time with him, not knowing how much time was left.
It got to the 11th day, and at that point, we had made the decision we were going to let him go at some point. We just hadn’t picked the day yet. We determined that the next day made the most sense to pull the tube out. I just was like, “I’m going to show up in the best way possible for Jackson’s last day.” We didn’t know how long it was going to take, but I wanted to have the whole day with him in that bed.
Then it was around the 5:30 PM timeframe where the Donate Life people came in and basically told us we’re not going to be able to donate any organs because they weren’t going to be helpful to…there wasn’t another baby with a specific diagnosis that would match. We kind of had to put that dream to bed of giving back through all of the struggle, but they did offer to use…if they did an autopsy, they could use some of the results for research. We opted into that.
A little bit after that visit, when we were told they couldn’t do anything, we decided to take the breathing tube out. I made sure Child Life Services was there, a musician was playing. One of the physicians, he had been there when Jackson’s accident first happened, but his rotation was over during our stay. Even though he was on another rotation or on vacation, he came back to the hospital for that day.
For about two and a half hours, my father was next to me, Jackson’s dad and his sister, and we just waited to watch him die. He was breathing very heavy. You could see his chest. I was holding him. It was really challenging seeing people who are known for saving lives in an ICU, just sitting there and waiting and watching with you, knowing that there was nothing left they could do. They administered morphine a few times just to see how he’d do with that.
They promised us that he wasn’t in any pain because that’s always the most important thing to me. At 8:09 PM on March 2, 2022, Jackson passed away. He was declared dead. It has significance because he was also born on August 9, which is 8-9. I just held him. I didn’t wait too long until I gave him to the nurse, and she brought him down to the place where they have babies who’ve passed.
I wanted to be surrounded by as many people as possible. My sister and mom were in a different room of the hospital just waiting for us. They had some close family and friends who then came with us back to the hotel. Then the next morning, in order to really try to prevent that from happening to anyone else again, a lawyer came to our hotel room. He looked at me and said, “What’s the best-case scenario for you, other than getting your son back?” Of course, that is the best-case scenario, but I wanted to make sure that it never happens again to any other baby or family.
We did all we could to gather as much information, hired another firm who could help us. This person, he was kind of on the edge of retirement, but he knew he wanted to help us. He was smart enough to bring in a larger firm and gathered as much information as possible to really make sure that we can make an impact on Jackson’s behalf, and make sure that there’s more supervision, especially when it comes to patients with rare conditions.
You can’t just treat them like any other baby, just like the anesthesia that we had to cancel because I was at risk of dying if they didn’t pay close attention to my differences. It’s just really hard knowing that we tried so hard to keep him so safe, especially during pandemic times, and we got to the hospital and everything fell apart.
Kerri Fitzgerald:
In a place where you feel like you should be most safe is where the worst thing a parent could ever imagine happens. I’m so sorry for what you and your family and Jackson’s father had to endure.
You have this video of Jackson on your website, on Becky Motivates. It’s a beautiful video, but what I noticed, what stood out to me, was that there were so many people holding Jackson in the videos with him and photos.
I know it was during COVID, you said. You said it was less people than you would’ve thought, but I thought, wow, so many people got to experience Jackson, and he got to make an impact on so many people. It was a beautiful video. I think sharing his story and doing what you’re doing to try to ensure that something like this does not happen to other people is so important. It’s a beautiful way to honor Jackson.
Becky Jackson Curran:
It is. One of my favorite parts is I think maybe one of the 1-second videos, I was sticking my tongue out at him and I got him to do it back. Of course, that would maybe make him fresh later on. He could get away with it at a young age, but just to be able to get him to respond and stick his tongue back out.
Coming out of that experience, I then tried to pursue IVF because Jackson’s dad and I both have achondroplasia. If 2 people with achondroplasia decide to have a baby, there’s a 25% chance that they would be double dominant, meaning they’d have no quality of life.
Then a 50% chance that they could be like Jackson, which we were blessed to have, and a 25% chance that they would be average height. While we were in Boston, we visited a center and they told us in the beginning that they were able to help us. Once they ran it by an ethics board…who wanted to help us, meaning my wish, even though I can’t get my son back, was to try to have a baby exactly like my son. Whether it was a boy or a girl, I would be totally excited. But just, “How do we prevent them having double dominant? How can we have the option to have another baby with achondroplasia?”
Because of just how ethics boards work, they basically said, “You cannot have a baby with achondroplasia if you want to do IVF. We’re only going to keep the embryos that would be an average height baby, so the 25% chance.” Then we went down to Maryland to another hospital to try to see if they could do a little different and their ethics board said the same thing.
Finally ended up at Cornell here in New York and they said, “We can label the embryo patient’s choice.” But at that point, a year and a half into this journey, I had taken a fall in the IVF office and knew that my back was getting bad. Also, my marriage was not in a good place. I think sometimes people say, “If things aren’t going well, try to get a dog or have another child.” But that was not going to fix the struggles that were ahead. I decided to put that journey on pause.
People often ask me, “Would you have another child if you could?” Absolutely I’d love to, but I’m also realistic of the logistics. I went from being a caregiver to my son, to requiring everyday care as a receiver of care. I just did not think that that’s a good idea to try to pursue that on my own at this point in time.
You can’t limit, as we say. My family has taught me to go after things in life, but I want to be realistic, too. Instead of trying to chase after something that may not make sense for me at this point in time, or for the rest of my life, “How do I maximize the impact that Jackson had on my life in the short time he was here and how can it help others appreciate their lives?”
Kerri Fitzgerald:
Yeah. Like you said, you had to go through this surgery, so you had to take care of yourself, right? Before you could think about what was next in your life. We talked earlier in the conversation about the surgery and how difficult that was. You had to relearn how to stand, how to walk, how to regain certain muscle functions. In Becky fashion, as we’ve come to find, the goal wasn’t just to be able to walk again. Your goal was to do a 5K. Which is incredible, and which you did.
Becky Jackson Curran:
One of the reasons why that passion and desire came up is while I was in the hospital, just quickly on just that hospital journey, I made an intentional decision to have an 8×10 photo of Jackson in my room, knowing that there would be medical professionals, multiple a day, who would come in and ask, “Who’s that cute baby?” Then they would ask how old and I would not be able to lie. Jackson’s dad initially thought, “Let’s not have that happen because that’s a lot for you to deal with.” But I was persistent and I said, “I want Jackson in my room.” He continues to come with me wherever I go.
While I was in the hospital, yes, I couldn’t even walk a few feet after surgery and had an extensive rehab stay at Spaulding in Boston. While I was there, I was committed to every therapy they could give me. If other people on the floor didn’t want their therapy that day, I would take it. Then I did outpatient therapy. I went to my 1-year post-surgery appointment with my surgeon in Baltimore, and she knew that I was getting fixated and hung up on my bladder and bowel issues.
She looked at me, and I was still using a power wheelchair at the time, and said, “I want to see you out of that chair, and I want to see you do a 5K.” Thought, “Whoa, I haven’t even figured out how to get out of this chair. Now you’re saying you want me to do a 5K?” Then I just started telling people, because I’m an open book, there are no secrets. Like, “My surgeon said I could do a 5K.”
Then I connected with one of the rehab doctors at Spaulding and he said, “Well, if your surgeon said this, you probably should have a goal or something.” They have a bunch of support groups that work closely with this Bionic Project. It’s someone who’s an amputee who decided to find this community where people of all abilities show up and choose whether they want to do a 1 mile or 5K. I got on a phone call with him and he said, “You should come to our race. You should probably maybe start with the mile.” I thought, “All right, let’s do it.” I went.
The goal has never been to be the fastest runner, and I don’t even identify as a runner. I’m very much a walker, but it’s for me and my own goals of getting from start to finish. I didn’t even tell my family that I was doing that first mile. I just brought my physical therapist with me and we did it together. They were finding out after the fact, “Why didn’t you tell us?” “Because I didn’t know if I was going to be able to finish it. I was just testing it out.”
We finished it. I posted about social media. New York Road Runners reached out. They said, “Come do one of our races. We have this race in September. Come do it. Can we actually film your story? We’d love to show your journey to the start and what got you there.” Then they said, “We absolutely have 5Ks and all those races, so come back anytime.” I had my eyes set on the Bionic Project, which I did the 1 mile in Boston.
They had a 1 mile/5K in San Francisco. I said, “Why don’t I go to that because I know already the whole community’s showing up, people with disabilities, people understanding?” But we knew that it was still going to take me a very long time to do a 5K. Everyone else started the day at around 8:30, 9. I started at 7 AM.
Then I think we got to 3 hours and 47 minutes, and we went around a track in San Francisco. It was initially supposed to be at Crissy Field, which would have been a little bit of rougher terrain. Not hilly. I know San Francisco’s known for hills, but they promised me not many hills. But the track actually worked in my favor because we had to do 11 laps around the track and that would lead to the 5K goal. Once I finished, I felt very accomplished.
Again, I didn’t overpromote it because I didn’t know if I’d finish it, but it makes me feel really proud that I was able to set a goal and prove to my surgeon that I listened and focused on that physical strength. It doesn’t stop there, as we talked, because I think it’s very important to do whatever I possibly can to stay in the best shape possible. There are so many unknowns still ahead.
Kerri Fitzgerald:
Yes. Yeah. You set a goal and you accomplished it, and that seems like a theme in your life since you were very little too, no?
Becky Jackson Curran:
Yes.
Kerri Fitzgerald:
You’re incredible, Becky. I’m so glad that you came to speak with us on My Hero 360. You have done so much. You have made such an impact. What’s the next thing for Becky?
Becky Jackson Curran:
I actually have a book in the works called “Call Me Becky.” Everyone gets so hung up on what to refer to someone with a physical difference or any type of difference as, but call them by their name first and get to know them. This allows people to dig into my story.
Of course, I have a chapter about Jackson, about all the activities I was involved in, the way I was raised, and really, my advice to help people get out of their own way and pursue what they’re passionate about, because life’s short.
Kerri Fitzgerald:
It is.
Becky Jackson Curran:
Also, encouraging people to welcome others as they are. With the book, I’m also working with the filmmaker who helped us with that 1-mile video. It’s a story just about my overall recovery and the support system that has helped me get to where I am. Even though I’m doing a lot of the physical work, because no one can do that part for me, it takes a village, and I truly believe that it does.
What has stuck with me for a very long time is a month after Jackson was born, my aunt, my mom’s sister, her last living relative, was in hospice, about to pass away from ovarian cancer. She told me, “Don’t try to be too brave.” That has stuck with me so much, because I think we all try to be too brave and too independent. We don’t realize the value of bringing others with us on the journey because we have the ability to lift each other up and make the world a better place.
Kerri Fitzgerald:
Yes, absolutely. You’re certainly doing that, Becky, every single day. Thank you for sharing your story. Thank you for sharing Jackson’s story. Thank you for being just such a positive example for many different groups of communities—rare conditions, achondroplasia, and moms. Thank you so much for speaking with us today.
Becky Jackson Curran:
Thank you. Moms, yes. I love being able to connect with mothers, whether they’ve experienced loss or not. It’s the strongest title that I feel that I’ve earned and continue to wear.
Kerri Fitzgerald:
Yes. That’s beautiful. Thank you, Becky.
Connect with Becky:
https://www.instagram.com/beckymotivates
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