Crystal Chigbu's world was seriously shaken when her first child was born with a deformation in her right limb. Crystal and her husband, Zubi, struggled with the difficult decision to amputate their daughter's leg as the challenges of raising her stared them in the face. They did, eventually. Today, her daughter moves about normally with her prosthetic leg.
Instructed by her daughter's condition, Crystal has desired to help couples facing the same circumstance. She started The IREDE Foundation with the aim of helping children without limbs have meaningful lives. She also helps such families go down the road she is so familiar with...
What was your first reaction when the doctor told you about the condition of your daughter, Beulah?
When I initially got to know about it, I concluded that I would never cope. I thought my world had collapsed and come to an end. There was no question I did not throw at the doctors, family and friends that cared to know, Why me? Why us? Why would God be so unfair to give me such a problem as this? The fact that we were told we would have to amputate her leg did not help matters. How was I supposed to manage a handicapped child? I am usually a very strong and faith-filled person; having gone through my fair share of life’s trials and overcoming. But sincerely at that point, I was confused, I felt dejected and forgotten. I felt helpless.
How did you overcome the self-pity stage?
At some point, I cast my mind to the scripture that says God would not give us a challenge too hard for us to bear, and that His ways and thoughts are higher than ours. Put shortly, God has been and is still my mainstay through it all. My husband also has been supportive and encouraging all the way. Every time I hold our daughter in my arms, I fall more and more in love with her and became more aware of what gift God has given us in her. I made up my mind to do all it would humanly take to get her to live a fulfilled life.
How difficult was the decision to amputate her right leg?
It was and still is one of the most difficult decisions I have taken in my life.
How did your extended family members take the news?
They did not take the news well. They took it badly. Historically, such a thing had never happened in both families. They sought for help everywhere and gave all sorts of suggestions. After going back and forth on the decision to amputate her right leg, we decided to do it. We actually missed scheduled surgeries but we finally went ahead to amputate the limb when she was two years and three months old. Once the area was healed completely, about two months post-surgery, she got a prosthetic limb. Interestingly at that time, she was the youngest amputee at the National Orthopaedic Hospital, Enugu; so we were favoured and getting the initial prosthesis was not that difficult.
Were you afraid at any point that something could go wrong with the medical procedure?
In as much as we knew that the best professionals were handling Beulah’s case, it was only human for negative thoughts to flood the mind. I prayed all through the surgery trusting that God was in total control of the situation. I was convinced that she would come out of the surgery alive and kept hoping for the best. Before the surgery, I never saw an amputee; all I could see was my daughter walking.
What role did your husband play during and after this time?
I thank God for my family! My husband, Zubi has been my rock; in actual fact, he has been our rock. He taught our daughter most of the things she knows today. From when she was three months old, he would take time to talk to her and tell her how beautiful she is, assuring her that all was going to be well with her. As a matter of fact, Zubi potty-trained Beulah, he is that father every child should have. I thank God for blessing me with such a man who loves and fears the Lord.
What can you tell us about Beulah?
Beulah is assertive and determined. She was born in Enugu, Nigeria on 20th May, 2009. She has a contagious can-do spirit that can make the hopeless want to live life afresh. She was diagnosed with Tibial hemimelia of the right leg; which is a congenital absence of the tibia and in her case absence of the patella, kneecap too. This is basically the absence of the kneecap and the big bone between the knee and ankle. It could have been detected during pregnancy but in her case, it was not detected until we gave birth to her.
How do you handle questions, glances and hush talks about your daughter’s prosthesis?
As I said before, I have never seen my daughter as an amputee or handicapped; all I see about her are potentials and abilities. The fact that people talk has not been an issue for me. For those who are bold enough to ask, I take time to explain what happened and also try to redirect their thoughts from pity to respect and appreciation for Beulah’s courage and independence. For the ones who hush talk, I ignore them and focus on building my daughter’s self-esteem; letting her know that God loves her and has a plan for her life. This is also what I try to do for the so many children I have adopted as a result of the foundation I set up.
How does Beulah relate with other children? Does she feel different or inferior?
No, not at all! We talk with her daily about her self-esteem; that the fact she has had a leg amputated and uses prosthesis does not make her any less than the children who are not like her. Occasionally, she asks questions about her leg and we try to explain to her what happened and why. Also, before the surgery happened we sought and got her consent. She goes to a regular school and as a result, she has the opportunity to interact with other children and she basically participates in almost all the activities in school.
You set up The IREDE Foundation to help children with this challenge, how far have you gone?
God has been our help and sustenance. So far, we have provided four children with prosthesis and are about to help the fifth child who is the first upper limb amputee that we would be attending to; he is only four years old.
Our most recent beneficiary happens to be a girl who had her legs amputated because of cancer of the bone; she was able to walk home as she got the prosthesis on her 10th birthday. After Beulah’s amputation, I started writing about our experiences to motivate other mothers to children with limb loss. With time, I began to receive calls from doctors to counsel parents and share my story. It was then I knew it was time to launch out and we incorporated The IREDE Foundation.
At The IREDE Foundation, we stand for hope, joy and a purposeful life to child amputees. As such, we are focused on three things—Educating caregivers and the society on congenital limb loss; and how to relate and care for children with this kind of loss, encouraging children and affected families to forge ahead despite the challenges of limb loss via the establishment of support groups and empowering child amputees to live their life to the fullest; through mentoring/coaching sessions and the provision of prosthetic limbs to indigent children between the ages of 1 -10 years.
Do you ever feel discouraged about the foundation?
So far, no, I don’t. The reason is that my daughter gives me the strength and courage to push on daily in spite of the challenges we face.
What are your challenges?
The two major challenges we have faced since we started have been getting the right kind and quality of prosthetic limbs for our children at an affordable cost; and fully establishing the support group structure so that parents can have access at any time. Finance and funding of operations and the foundation’s programmes also pose a challenge but we try to get the best out of every situation. As a mother, I will not deny thinking and worrying about how Beulah would cope when she gets married and is raising her own children. However, I am learning to let go and trust God.
What advice do you have for couples in your shoes?
I could advise them on a lot of things but the most important advice would be to be strong because it is not the end of the world. Limb loss is not mind loss; and all kids with limb loss can still be who they were born to be. As parents, we need to rise out of the pain and confusion and be there for our children so they can shine and live to their fullest potential. Finally, I would advise them not to be limited in their thinking; everything is possible.
Can you tell us more about yourself?
I am Crystal Chigbu, the last child of ten children from my parents. I studied Biochemistry at the University of Lagos. I currently work as a manager at one of the top FMCG companies in Nigeria. I love meeting people, listening to people’s challenges with the hope of working with them to find solutions as much as I can.