From Trials to Triumph: I Was Born with Microphthalmia

By Dupsy

FROM TRIALS TO TRIUMPH is a book co-authored by a mother and her daughter. It looked at life during her pregnancy labour and after the birth of Hannah who was born with microphthalmia. Its about how they turned their challenges of Hannah's disability to triumph.

• Language: English
• Publisher: Trafford Publishing
• Release date: Sep 26, 2012
• ISBN: 9781466912151

Dupsy

Dupe Adegun is a Nurse, a Midwife and a mother of two wonderful children. She spent part of her early Nursing and Midwifery career in Nigeria before proceeding to England in 1989. Her Nursing and Midwifery spans over three decades and is currenty working in Essex as a School Health Adviser. Hannah Oluwatuminimu (“the Lord has comforted me”) Adegun was born with microphthalmia (small eyes and blindness) at Homerton Hospital by emergency caesarian section on January 2, 2003, at 19.41 p.m., weighing 4.7kg = 10lbs 6oz, HC=39cm, Length=59cm T36.4 Hannah is an accomplishe autor in her own right as some of her work have been published along others' children's stories and peoms by Young Writers Publishing Company. Some excerpts from her work are in the book.

Book preview

Contents

Dedication

Acknowledgements And Gratitude To Moorfields

About The Authors

Introducing To You The Captain Of Our Soul

Why Write A Book Now?

My Life In The Choir

Fate Brought Us Together

My Faith At Work, The Egypt Experience

The Conception And Confirmation

The Challenges That Follow

At 36 Weeks Of Pregnancy, My Baby Was Breech (Bottom Down)

Lord Why Me?

Background Information On Micropthalmia

The Lord Giveth And The Lord Taketh

Work Began In Moorfields In Preparation For Prosthesis

Hannah Before Her Prosthesis Was Fitted

Meet My Family

How The Journey For My New Eye Began

What I Love About My School

How We Perceive Disability In Children

Are Women Truly An Object Of Ridicule

The Care You Provide Can Kill Or It Can Bring To Life.

The Child You Walk Away From Might In The End Be Your Saviour

To Parents And Carers

We are mother and daughter who have decided to use our life’s experiences to help to shape the lives of others through our trials and triumph.

DEDICATION

We would like to thank our heavenly father the God of all comfort, through whom we found comfort, joy, and strength from day to day. To our Lord and Saviour, Jesus Christ, whose immeasurable love has given us a new lease of life; to the Holy Spirit, the one called alongside to help, nurture, and inspire me from the beginning of this book to its very end and made it possible to publish it. I am grateful to all my parents and those who have supported me all along in all my endeavours in life. I dedicate this to my father who is growing gracefully in the Lord

Captain Williamson Adetunji Taiwo (Retired)

To all my siblings and my wonderful nephews and nieces, for all their love and support to me from time to time

Some of my parents and guardians are no longer here to enjoy the fruit of their labour and their valuable and immeasurable contribution to my upbringing, but as I press on in my calling in total admiration

Appreciation and gratitude, I also dedicate this book to their loving memory:

Mrs Morounkeji Allen Nee (Williams)

Mr Thomas Bababunmi Williams (Babs O Willy)

Mrs Irene Folashade Williams Nee (Thomas)

Mrs Henrietta Iyabode Taiwo. Nee (Allen) A wonderful wife, mother, aunt, and grandmother. Although you have all passed on to glory your loving memory lives on in our hearts. Adieus

A note from Hannah:

I dedicate this book to David and Dupe Adegun, my wonderful parents for their undying and unfailing love for me, for cherishing, nurturing and guiding me in life and for believing in me and supporting me to the best of their ability and finally to my one and only big brother Onawale Kuforiji.

ACKNOWLEDGEMENTS AND

GRATITUDE TO MOORFIELDS

Our acknowledgement and thanks goes to the entire staff of Moorfields Eye Hospital for all their hard work, their effort, commitment, their time, their valuable contribution and their services and sacrifice to humanity. We are grateful. We thank you for the daily provision of eye care and treatment to children and adults alike.

Moorfields provides a family friendly environment where children can paint or colour books, read, and play with toys.

It is a home from home and we have had wonderful experiences going there for Hannah’s eye treatment.

Hannah always looked forward to going there as she sees it always as a time for treats away from school and a chance to have her parents all the day to herself as this always brings tremendous joy to her face. This is about the only time that she gets to go on the train and buses. A time to take a trip to some of the interesting places in the city, above all it is a time for eating out. We sometimes seize the opportunity to wander around the shops a bit afterwards to make it fun for her.

As a nurse and a midwife, I know that we do not always get the recognition we truly deserve, and that is why I devote this page to all the staff at Moorfields, from the junior staff to the most senior staff to commemorate their work. Thank you for the services and the care you provide to the public. Thank you for working tirelessly even when your body is aching and weary from prolonged labour and long shift. Despite coming across some very impossible and difficult patients and relatives, you still keep on keeping on. For two years, staff salary was frozen; you still kept your cool and dignity. You did not complain and did not fail the members of the public who use the service seven days a week and throughout the year. I commend you all and I thank you for your unfailing dedication and commitment to improving and transforming the lives of children, their families, and carers. God Bless you thanks for being there for us all.

We acknowledge the generosity of various individuals and public figures who invested in the on-going work in Moorfields in order to improve the services thereby bringing hope and restoration of sight to a seemingly impossible and hopeless situations. Putting smiles, back on children’s faces when they look in the mirror and see the makeover and the differences the shield or prosthesis and sometimes the glasses made to their lives. As parents and carers our faces light up as we admire our children and watch them grow in confidence and self-worth. Their self-esteem hits the roof and tear down the walls of separation that want to stop them from enjoying and living their lives to the full. Achieving and maximizing their potential and reaching for the stars. We then feel that working in partnership with the hospital staff has given our children a new lease of life. Why would I not shout aloud for Moorfields, a place where lives are transformed and hope is restored? For all your eye treatment, Moorfields is the place.

M illions of children and adults alike have passed through

O ngoing research keeps wading through helping to reform services

O nly those who have passed through can really appreciate your staff

R oad to Moorfields is not paved with gold but was built with wisdom

F ellow users will agree that their time at Moorfields was worth it

I nvestors in people and open to fresh innovation

E qual opportunity for all staff

L abel of excellence and quality care

D evelopment and training

S taff are valued

ABOUT THE AUTHORS

Dupe Adegun is a Nurse, a Midwife and a mother of two wonderful children. She spent part of her early Nursing and Midwifery Career in Nigeria before proceeding to England in 1989. Her Nursing and Midwifery spans over three decades and is currently working in Essex as a School Health Adviser.

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Dupsy

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Hannah

Oluwatumininu, Oreoluwa, Hannah Adegun was born at Homerton Hospital by Emergency Caesarean Section on 02.01.2003 at 19.41. At birth, she weighed 4.700kg = 10lbs 6oz, H.C 39cm, Length 59cm, and T36.4 and has a birth defect—Microphthalmia (Small Eye and Blindness). She currently attends St Margaret’s C.of.E. (V.A.) Primary School, Bowers Gifford. She is an accomplished Writer in her own right and has written a few poems and make belief stories which were published with some other children’s stories and poems. Some excerpts of her previous work are included in the book.

INTRODUCING TO YOU THE

CAPTAIN OF OUR SOUL

Please fastened your seat belts get your popcorn, tea, coffee, or soft drinks ready, as you would need it as you walk with us on this journey of life. You are welcome on board ‘Flight Heaven-bound’, we are on cruise control, and your captain is none other than the best captain in the entire world, the Captain and the keeper of our soul. With Him in your boat, you can go to sleep. He has never crashed or crash-landed a plane (Life) before and any plane (Life) committed into His capable hand will land smoothly and safely on the ground of destiny, discovery, and enlargement of coast, abundant life restoration, and recovery of wasted years. His CV is Omnipotence Omnipresent, Omniscience, All-knowing, Everlasting, Eternal God, and The Ancient of Days. He can never crash your plane but would mount you on eagle’s wings and the greatest heights of rollercoaster of salvation, encouragement, laughter, joy, and peace amidst life’s circumstances. We present to you none other than The Messiah of the World, Our Lord, and Saviour Jesus Christ, the same yesterday, today and forever. Amen!

Hannah’s Prayer 1 Samuel Chapter 2: Verses 1-10

Hannah prayed: I’m bursting with God-news (good-news)! I’m walking on air. I’m laughing at my rivals. I’m dancing my salvation. Nothing and no one is holy like God, no rock mountain like our God. Don’t dare talk pretentiously—not a word of boasting, ever! For God knows what’s going on. He takes the measure of everything that happens. The weapons of the strong are smashed to pieces, while the weak are infused with fresh strength. The well-fed are out begging in the streets for crusts, while the hungry are getting second helpings. The barren woman has a house full of children, while the mother of many is bereft. God brings death and God brings life, brings down to grave and raises up, God brings poverty and God brings wealth; he lowers, he also lifts up, He puts poor people on their feet again; he rekindles burned-out lives with fresh hope, Restoring dignity and respect to their lives-a place in the sun! For the very structures of earth are God’s; He has laid out his operations on a firm foundation. He protectively cares for His faithful friends, systematically, but leaves the wicked to stumble in the dark. No one makes it in this life by sheer muscle! God’s enemies will be blasted out of the sky, crashed in heap, and burned. God will set things right all over the earth, He’ll give strength to His king, He’ll set His anointed on top of the world! I love Hannah’s prayer because it is encouraging and it demonstrates that our God is a God of knowledge, by whom the actions of the heart are weighed, and He rewards based on His findings. I am not entirely barren but the situations and circumstances of life made my womb barren for eighteen long solid years. I was not barren by the literary meaning of the word, but if you had been through what I went through and spiritualise life’s situation, then I would be considered as barren. And you would agree with me. I was back on the waiting game again. Nevertheless, to God be the glory because I was pregnant again after eighteen years of waiting and at age 42…

WHY WRITE A BOOK NOW?

These are the best days of our lives, hence this book is written now and not before. Its objectives and purpose would have been defeated had it come before Hannah was born and again, Hannah’s birth brought the physical manifestation of the story. The book would not be complete without her, as you would discover in the book as you read on. My precious baby daughter, Hannah wrote her own perspective of her life in the book. The Bible says in Psalm 92 verses 12-14. The righteous shall flourish like a palm tree; He shall grow like a cedar in Lebanon. Those who are planted in the house of the Lord shall flourish in the courts of our God. They shall bear fruit in old age; they shall be fresh and flourishing, to declare that the Lord is upright; He is my rock, and there is no unrighteousness in Him. I became pregnant with Hannah at forty-two years of age whilst her older brother was eighteen years old. I never thought for once that I would write a book let alone publish a book at fifty-two, but today this vision that was too far to reach is now a reality and it is as a result of given birth to Hannah that this has come into effect. Hannah the second of two children was born with a birth defect-Microphthalmia. This came as a complete shock and total utter disbelief. It was like a bad dream and I kept telling myself that I would wake up from and soon realise that it was just a dream. However, it was not A DREAM IT WAS REAL AND IT’S HAPPENED TO MY LONG AWAITED DAUGHTER MY VERY OWN CHILD. I first noticed the defect soon after she was brought over to me. I scooped her in my arms not fully recovered from the Effect of Anaesthetics and there it was. I tried to reassure myself that it was just because I was coming round from anaesthesia, and was still dopy that once I was properly and fully awake I would realise that it was just a pigment of my imagination. However, it did not go away, the shock of it was a rude awakening that I could not possibly get over. It never occurred to me that a day like this would come in my life, where I would be dealing with something as complex as Microphthalmia and it would be with someone from my immediate family, my own precious daughter. As a professional, I never for once thought that something like this could happen that it would change my life forever. In my professional life I have not come across any newborn, infant, or child that had the condition because it is very rare 1:14000 and is a major cause of blindness in 3-11% of children. I have seen it in my Midwifery textbook and that was the closest I have seen of it. However, for me to have to see it right within my flesh and blood was just too much for me to take in, to deal with, and to handle. First, I had waited for eighteen long years to have another child, and secondly she is the firstborn of my husband this made it unacceptable to me, thirdly the way and manner in which it was discovered made it even much more difficult for me to digest. It was like a bad pill to swallow when I thought the worse was over after having gone through a difficult and prolong labour. I had Artificial Rupture of membranes, (ARM) with Meconium Stained Liquor Grade III, Syntocinon Infusion, (Drip) two failed epidurals, and finally Emergency Caesarean Section. Being the first to notice the eye, and brought it to medical attention was the climax as I was just beginning to think that I could relax and finally enjoy my baby that the worst was over but as you might have guessed, the discovery was quite devastating to me. I became very angry as the reality starred me in the face. My God! How do I deal with something of this nature? This is something that I did not have direct control over. Could I have prevented it from happening? If it was, God knows I would have prevented it. However, in my role as a nurse or midwife, I have always been the one breaking terrible news to parents and relatives alike and I was very good at my job of breaking bad news. First, I would prepare a room and walked the concerned relatives gently to the family room I would muster all strength expertise and slowly but gently break the news in a very sensitive and empathetic way sometimes with a very heavy heart. I tried to hold back the tears, because I had to be strong for my client. At other times, I have found myself weeping with the bereaved relatives because I had cared for their relatives or from the beginning of my shift to the end of my shift in the case of bereavement. In addition, a woman in labour whose baby was born with Down syndrome cleft lip or cleft palate. However, for me there was nobody there to even comfort me and reassured me. That everything would be all right. The anguish of my soul would get better with time. It was a sad time for me alone in that cold recovery room with my baby and behind the screen. At the time of her birth, I could not see beyond my pain and numbness but over the years. I believed that Hannah (Grace) was brought into my life for such a time as this. First, for whom I am and secondly because of the ability of God that resides deep within me. I never knew that I could handle it or live with it and make the best of it. However as I began to let God into my situation and yielded to His teaching on how to nurse and care for my daughter I began to enjoy motherhood again. It was now a question of what I want out from the whole experience. I asked myself do I want it to be a normal life as usual, or do I want it to be an extraordinary life. I realised that I could actually turn this around into a lifetime source of lively-hood for her benefit as well as mine but how. I did not know that I could turn the whole story into a book until the Lord dropped the idea in my heart. I did not know at the time of Hannah’s birth that her birth defect—Microphthalmia was a set-up and a book package. This discovery is a bumper harvest, a double-whammy, a double, double blessing and divine breakthrough: A potential waiting to be uncovered. Although at the initial stage, the pain and anger I felt consumed me to the point of no return. I developed a high blood pressure. One might ask. Did I ever plan to write a book? The answer is a capital NO. I believe that this is the plan of God that if I did not catch the vision or the revelation when Hannah came into my life the vision (book) would have died with me. As I began to nurse and nurture my child and gave my all to doing this job, the thought crept in again. Why not turn this around and write about your experiences. At the beginning I did not know how or where to start from. However, I was putting something down every now and then and as I did this, even though it did not make any sense I persevered and the rest is history. Today we got to this point and everything that was ordained and already prepared from the foundation of the earth began to come into full play. The resources and funds began to shape the future of the book and I realised that Hannah too was getting very excited about her life and about the book. It is a bit too late now to draw back. I have to see it through to the end or else Hannah would not forgive me for psyching her up and disappointing her expectations in life. I decided that we would defeat what appeared to be a complex and challenging situation. Caring and raising Hannah became a joy and a passion that gave the impetus to turn our story into a success story to share with the world. You see for every challenge we face in life there are great potentials waiting to be uncovered as we discovered. Some birth defects are not naked to the ordinary eyes that is cannot be seen or noticeable by all unless the person (carrier or sufferers) decides of their own accord to talk to you about it. However, Microphthalmia is not one of such, it stares you straight in the face, and you just need to find a way of dealing and coping with the challenges that come with it. This is on a daily basis and as such as parent’s carers we need to be able to provide the right help and support that our children need to find the right balance. A means of coping or a defence mechanism as this can leave them sad, dejected, and depressed and in most cases, it leaves children in a constant mode of self-pity.

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If our children are sad, where does that leave us as parents and carers? Are we going to keep them at home because of embarrassment or are we going to pump into them so much love, grace, kindness encouragement that