For every parent, the birth of a child brings joy but for the Chigbus, that was not to be. Instead, anxiety took over as the doctors told them that their newborn, Beulah, had a congenital limb deformity known as tibial hemimelia, a rare condition of a missing bone in the leg and knee cap.
Tibial hemimelia (tibial deficiency) is an extremely rare medical condition that occurs in only in one out of every one million births
The only choice to correct this medical condition was to amputate the affected limb of their tender tot. The family couldn’t bear the tough decision of bringing their little Beulah to undergo the procedure. They had sleepless nights weighing the options as well as thinking about what this would mean for little Beulah’s life. She finally had her right limb amputated at two years old. And she never looked back since the day she took her first steps with her prosthetic limb,
Her mother, Crystal Chigbu, riding on the success of the surgery and the new lease of life for her baby, threw in the towel after a 12-year stint as a sales and marketing executive to focus on advocacy work for children and teens living with disabilities as the founder/chief executive of IREDE Foundation. Apart from providing prosthetic limbs to child amputees, they inspire action to them to enable them live independent and limitless lives.
In this interview with Daily Sun, Crystal recalls her journey with her little Beulah, the stigmatization of having a child with such disability and how she found strength in adversity.
What is it like to have a daughter born without a shinbone?
The moment we found out that our little child, Beulah, was born without a shinbone, it was like a wave of emotions hit us like a ton of bricks. It was like the kind of news that just leaves you stunned and struggling to catch your breath. It wasn’t something we were prepared for, and it felt like we were navigating through uncharted waters.
Seeing her tiny form face this unexpected challenge was tough. I mean, every parent hopes and dreams of their child having a smooth journey through life. Suddenly, those dreams were intertwined with concerns we hadn’t even considered before and the thought that she might not be able to walk or run like other kids was really tough to wrap our heads around. It was really an emotional rollercoaster. There were moments of deep fear—wondering how we’d handle the medical procedures, surgeries, and the unknown road ahead. And then there was uncertainty. We didn’t have a roadmap for this. We didn’t know what to expect, what decisions to make, or even who to turn to for guidance.
But perhaps the most poignant feeling was a sense of loss. It’s like mourning a future that you had imagined so vividly. We had these dreams of Beulah running around, playing sports, and just being a carefree child. Those dreams felt challenged, and it was a grief of sorts, mourning the innocence of those expectations. Through it all, though, we found strength in each other and in the incredible support system around us, and gradually, we realized that while Beulah’s path might be different, it could still be incredibly rich and fulfilling.
It’s been a journey of learning, adapting, and embracing the uniqueness that Beulah brings to our lives. We’ve seen her defy the odds, showing a determination that leaves us in awe. And while there are undoubtedly tough moments, the love and joy she brings to our lives far outweigh any challenges we face. It was an emotional rollercoaster, filled with fear, uncertainty, and that profound sense of reimagining what it means to be a parent. But in the midst of it all, it’s also been a journey of discovery, resilience, and appreciation for the remarkable strength of our daughter.
How did you battle it before you found a solution?
My husband and I faced some incredibly tough decisions during that time. One of the hardest choices we had to make was to amputate Beulah’s limb. It’s just not the sort of thing you ever think you’ll have to consider as a parent. The decision to go for amputation was heavy, like a weight pressing down on us. It wasn’t something we took lightly. We had countless sleepless nights discussing the pros and cons, thinking about what this would mean for our little Beulah’s life. It was like walking on a tightrope between hoping for the best and facing the reality that she might face challenges that we couldn’t even comprehend.
And the emotional struggles that came with that choice were something else. On one hand, we hoped that this decision would provide her with greater mobility and independence. But on the other hand, there was this lingering sadness, almost mourning for what we were giving up.
The surgery itself was an experience. Seeing our precious Beulah in that hospital room, it felt like our hearts were caught in a vice grip. But even in those tough moments, we knew we were making a choice that would give her the chance to lead a life filled with opportunities, just in a different way.
The journey of adjusting to the prosthetic leg was a learning curve for all of us. Beulah’s determination was like a guiding light through those trying times. Every step she took with her new leg was a victory, not just for her, but for the family.
Looking back, battling through all of this was like riding a rollercoaster through a thunderstorm – filled with ups, downs, and moments of sheer turbulence. But as challenging as it was, it’s also been a journey that brought us closer together as a family and made us appreciate the incredible resilience that exists within all of us.
What was your child’s reaction when she understood that she wasn’t walking like other children?
Watching Beulah grow up and gradually became aware of her own unique situation was a journey in itself. Her reaction was something truly remarkable. When she first started realizing that she was facing something different from other kids, you could see the wheels turning in her mind. It was like this mix of wanting to understand why she couldn’t run around like her friends and an innate determination to not let anything hold her back. It’s funny how children can be so perceptive and yet so full of wonder all at once. I’ll never forget the day she took her first steps with her prosthetic limb. It brought tears to our eyes. You could see the sheer determination in her expression—this fierce drive to conquer the challenges that life had presented her. It was as if every step she took was a triumph, not just for her physical progress but for her indomitable spirit. Her resilience wasn’t just a source of strength for us as parents; it radiated out and touched the lives of those around us. Friends, family, and even complete strangers found inspiration in her journey. Her positive attitude and radiant smile, even in the face of adversity, it was like a beacon of hope for anyone who was dealing with their own hurdles. She is truly living her name “IREDE,” which means “hope has come.”
What were the survival strategies that kept you going?
Firstly, it was about holding onto each other. My husband and I were like a team that faced everything together. There’s something incredibly comforting in knowing that you’re not alone, feeling the same fears, the same joys. Our bond became an anchor in the storm, reminding us that we’re on this journey together. But it wasn’t just us against the world. It was also about embracing the power of knowledge. We became avid learners, soaking up every bit of information about Beulah’s condition, potential treatments, and the experiences of others, mostly outside Nigeria, who’d walked a similar path. Knowledge became our sword and shield, helping us make informed decisions for the best care for our daughter.
Eventually, advocacy became a part of our survival strategy. We realized that by speaking up and sharing our story, we were not only advocating for Beulah but also for others who might be facing similar challenges. It’s like turning something personal into a mission to create awareness, break down stereotypes, and foster a more inclusive society, which birthed The IREDE Foundation. What truly kept us going was the flame of hope. It’s what fueled our determination, reminding us that no matter how tough things got, there was always a glimmer of possibility, a chance for things to improve. And witnessing that hope manifest in Beulah’s progress, her triumph was like the most beautiful reward.
…And the low moments?
Of course, we had our down moments too, moments when the challenges seemed insurmountable. In those moments, the support of our friends was like a lifeline. Their understanding and encouragement reminded us that we were surrounded by a safety net of love. All of these kept us pushing forward, no matter what.
How would you describe the stigma you and Beulah faced because of her rare bone disease?
The stigma that often accompanies having a child with a disability is something we had to face head-on. It’s like there’s this unspoken script that society expects families to follow, and when you don’t quite fit into that script, things can get really complicated.
I remember those early days when we were just coming to terms with Beulah’s unique situation. As we went out, we could feel those curious glances and sometimes even the sympathetic smiles. While some people genuinely showed kindness, others seemed to view disabilities through a different lens—one that was filled with pity. It’s as if they saw our situation as something to be pitied, and that can be incredibly hard to digest. The worst part is that kind of stigma often leads to exclusion and isolation. There’s this underlying assumption that if you have a child with a disability, you somehow don’t belong in certain social circles or situations. It’s like an invisible barrier that separates your child from their peers, and that can be incredibly isolating.
And, you know what’s sad, it’s that this stigma isn’t just a one-time thing. It’s this ongoing weight that you carry around, the fear of judgment, of awkward interactions, of people not really understanding what your child is capable of. It’s like constantly being on guard, ready to counter misconceptions and stereotypes. But amidst all of this, what we’ve learned is the importance of building a strong support system. That’s been a game-changer for us, and that’s one of the things we do for parents and caregivers at The IREDE Foundation. We connect with parents who are on a similar journey which has helped them navigate the murky waters of stigma.
Its not just about the emotional toll. There are practical challenges, too. Stigma can create barriers in accessing education, healthcare, and even the simplest social interactions. It’s like being caught in a web of misconceptions that you constantly have to untangle just to ensure your child has the same opportunities as everyone else. Therefore, it’s important to talk about the stigma associated with having a child with disability because you are shedding light on something that often remains hidden in the shadows and inspiring action so that society becomes more aware and inclusive.
Given your experience, what would you tell people who suffer from this ailment?
It’s important to give them hugs of reassurance and share some hard-earned wisdom with them because when you are facing a challenge like this, a few words of encouragement can make all the difference. First and foremost, I’d tell them that they’re not alone. I know, in those early days, it can feel like you’re on a solitary island, battling a storm all by yourself. However, there’s a whole community out there that understands and have been through the same storms and come out stronger.
Although, it’s easy to feel overwhelmed, to doubt yourself and wonder how you are going to navigate through this uncharted territory but you have an incredible well of strength within you. It might not feel like it right now, but you’re capable of so much more than you realize. Each day you get up, each hurdle you clear is a testament to that inner strength. And don’t be afraid to own your uniqueness. It’s like having a puzzle piece that doesn’t fit the conventional picture. That doesn’t mean it’s any less valuable. In fact, it’s what makes your story so beautifully unique. The challenges you’ve faced, the mountains you’ve climbed are not just obstacles. They are the building blocks of your resilience. Wear them like badges of honor.
But let’s talk about something crucial: seeking support. It’s not a sign of weakness; it’s a smart move. I am also a Grief recovery specialist, and one thing I tell my clients is to lean on your loved ones, your friends, and anyone who genuinely cares about you. You’ll be surprised at how much love and understanding they have to offer. And don’t hesitate to reach out to organizations that specialize in helping people like you. They’re like beacons of light in the darkness, offering guidance and a sense of belonging at The IREDE Foundation, we have experienced this.
Lastly, always remember this: Your potential knows absolutely no bounds. I mean, look at Beulah—she’s living proof that determination can shatter ceilings. Your dreams, your aspirations, they might need a little creative molding, but they’re still valid and achievable. Keep your eyes on the horizon, because you’re capable of achieving greatness, no matter the circumstances.
So, if I could pass on a message to anyone grappling with any challenge, it would be this: you’re stronger than you think, you’re not alone, and your journey is filled with endless possibilities. Embrace it, seek support, and know that you’re capable of creating a remarkable story of your own.
From your child’s health challenge, what has life taught you?
Life has this way of turning unexpected challenges into profound life lessons. And from Beulah’s journey with her disability, I’ve learned some incredible things—things that have reshaped how I see the world and my place in it.
First and foremost, it’s the power of hope that has truly struck me. In the face of uncertainty and adversity, hope is like a steady beacon guiding us forward. Watching Beulah’s unwavering determination, her refusal to let her circumstances define her—that’s hope in action. It’s a reminder that even in the darkest moments, there’s a glimmer of light if we’re willing to look for it.
And resilience, oh goodness, that’s another life lesson etched into my heart. Our ability to bounce back, to rise above challenges – it’s like witnessing a masterclass in resilience. Life can throw some pretty tough punches, but it’s our ability to get back up and keep moving forward that truly defines us.
One thing that really struck me is how our mindset shapes our experiences. Sure, challenges are like those unwelcome guests that show up uninvited. But it’s our response to them that can change the whole game. Beulah’s journey has taught me that even though we can’t control the circumstances, we have complete control over how we navigate them. It’s a lesson in choosing positivity, in finding silver linings even in the stormiest clouds.
The lesson is about empathy and understanding. Walking this path with Beulah has made me more attuned to the struggles of others, more compassionate. It’s like having a lens through which I see the world in a different light—one that’s more considerate, more accepting of diversity. And that’s where advocating for a world where every individual, regardless of their abilities, is celebrated and supported.
Life has an incredible way of teaching us through experience, and Beulah’s journey has been one of my greatest teachers. As we continue on this path, I’m reminded that the lessons are ongoing, – each day offering new insights, new opportunities to grow, and new reasons to celebrate the extraordinary journey that is life.
