someone who made the most of her pain. This story is published with her express permission.
Mrs. Crystal S. Chigbu, mother of 20 months old Eden and three year old Beulah who was born with congenital limb deformity. Crystal studied Biochemistry at
the University of Lagos and currently works as a Manager at one of the top FMCG companies in Nigeria. She loves meeting people, listening to people’s challenges and proffering solutions.
children between the ages of 1 -10 years.
‘Push! Push!!’ It’s
coming! almost there!, as I heard the midwife. I gave it all I had within me and
finally I felt my baby girl come through my body. The beautiful angel I prayed
for finally arrived on the 20th of May 2009. My husband was then allowed into
the theater and I noticed he had a funny look on his face as he starred at our
baby. Of ‘cos at that point I could not alter a word. But as soon as I was
wheeled back in to the ward, I asked my hubby, what’s wrong with our baby. His
answer to me was quick and precise, “You need all the rest you can get, she’s
gonna be fine, all is well”. Later I saw my baby’s leg and noticed it was
turned backward, confusion set in and I only wish it was a dream. The doctor came in
the next day- 21st May, 2009 and told us we couldn’t leave the hospital yet as
we had to see an orthopedic doctor. Initially we thought it was just a mere
club foot, which could be corrected with a few serial casts. Then the orthopedic
guy gave us the news …..
On the 22nd May, 2009
our doctor explained that it was more complex than a club foot; we had a case
of a missing bone. He assured us that once we did an X-ray we would be sure
which bone it was and what to do. “Bone ke? How can a bone be missing?” God!
What have I done wrong? What didn’t I do right? Those were the silent prayers
within me. I prayed for a miracle, we desperately needed one! We were later
discharged and advised to go to the Orthopedic Hospital Enugu.
My six day old
baby had to do an X-ray. She wailed & cried and I wondered why God would
allow her go through so much pains. I wish I could bear it for her. We were
later booked for an appointment with a consultant and then had to brace up with
the reality of our situation. My daughter was diagnosed with Tibial hemimelia
of the right leg; this is a congenital absence of the tibia and in her case
absence of the patella (Knee Cap) too. The long and short was that is; the big
bone in the right leg was not there, not just that, the knee cap also did not
form … as such she might not be able to stand or walk without an aid. Chills
went down my spine. I held back the tears because I had to be strong as I
processed the implications of the diagnosis. No bone in the right leg and No
knee cap….. I was quick to ask …
“Doctor so what are our options? “ We were given a number of options from
serial casting to disarticulation (Amputation), why amputation? And that is
supposed to be the best means?
We decided to opt for the serial castings which
I stopped when she was 1 year old as there was no sign of
improvement. We eventually got booked for the
surgery but we just did not show up. We could not comprehend it (when I say we,
I mean my husband and I). We decided to seek a 4th and 5th opinion, all options
we sorted both in Nigeria and abroad confirmed disarticulation as the best
option. I wet my pillows all night as I thought of the option we were faced
with; ceaselessly crying and thinking was all I did.I will never forget the
day she came back from school as a 2 year old and asked why other children in
her class could walk and she was still crawling. That day, I cried my eyes out
and wished I could make the bone grow out immediately.
On the 30th of
September, 2011, Beulah finally went in for surgery and the limb was taking
off. She was 2 years and 3 months old. Thinking of it still brings tears to my
eyes……… Once the area was healed completely (about 2 months post-surgery) we
got a prosthetic limb. The first time
she stood in her school uniform brought tears to my eye, that was very memorable
for me, By God’s grace, we have had lots of good times. I remember the day she
swam for the first time…I still cried but this time out of joy and gratitude to
God. There are also other days like the first time she showed her Dad her
ballet poise, stood to sing a carol in school and so many others.
amputation, I started writing about our experiences to motivate other mothers
of 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 Foundation, we stand for hope, joy and a purposeful life to child
amputees. We desire to create
awareness on the challenges facing child amputees and how to care for them. As
such, on Saturday, the 6th of April this year, we will be having the ‘OUT ON A
LIMB’ Awareness walk in Lagos. We expect
to have about 500-1000 people at this awareness walk; thus we encourage
anyone interested in giving hope, joy and meaning to child amputees to join us.
from a confused first-time mom to a pillar for her daughter; challenging her to
believe in herself, engage in all activities her peers engage in and live her
life to the fullest. Crystal believes that the worst kind of disability is in
the mind; and this, she wishes to share with all kids with limb loss, their
families and care-givers.
about The IREDE Foundation and its awareness walk,
please visit – www.theiredefoundation.org