My name is Nneka Obiagwu, and this is the story of my journey overcoming obstacles and adversity ranging from fibroid complications, infertility, miraculous delivery of two exceptional boys and sailing on through a diagnosis of an Autism Spectrum Disorder. I was born and bred in the eastern part of Nigeria in the 70’s and all my life all I wanted was to be a diplomat; in particular I aspired to be the first African Female Secretary – General of the United nations. As the daughter of a lecturer of political science I was quite politically aware and had made a decision after coming across a book of my father’s on How to be come a Specialist in International Relations that I was going to become a conflict negotiator, I picked out the courses I would have to study to achieve that, the schools I would have to attend and the requisite skills I would need to have, that was how serious and focused I was.
I swiftly went about accomplishing all those objectives; I graduated with excellent grades in Political Science from the University of Nigeria, Nsukka and moved on to Abuja where I subsequently worked at our National Assembly and The ECOWAS Parliament, hoping to horn my skills before leaving for my graduate program. It was at this stage in 2003 that I hit my first serious obstacle. After months of observing some severe changes in my body I finally went to the National hospital to get to the bottom of it and was informed I had symptomatic fibroids. My level of shock and confusion can not be adequately explained cos here I was, an able bodied, young, unmarried girl in her mid-twenties reaching for the stars and I was being told I had something which up to that point I had only associated with much older women in way different circumstances than I.
Unwilling to accept the only options that existed at the time which was surgery we decided to let it be, manage the associated symptoms and just get on with life. This we did but within a year of discovery it was obvious something needed to be done and fast. The fibroid had grown so big that my stomach was physical extended and the complications associated with the positioning of the fibroid which was right on top of the bladder at the cavity of the uterus could no longer be ignored, to worsen it I suddenly found myself in the throes of so much pain that I needed emergency surgery. On the 15th of November, 2004 I had a myomectomy and the findings were shocking – an enlarged uterus approximately 14 weeks cyesis size with a huge posterior intramural fibroid measuring 10 * 8cm and six anterior / fundal subserous fibroids and a ruptured ovarian cyst.
Unfortunately I had post operative complications and by the time I eventually left the hospital almost two weeks after the surgery I was dealing with issues of infection on the incision site, constant rupture of the site and even more bizarrely more intense pain. This persisted well into the coming months till I left to Europe for my graduate program. Days after I got into Europe I was back in a doctors chair presenting with chronic gynecological pains and further investigations led the doctors to the conclusion that I needed to undergo another surgery – a laparoscopic uterine adhesiolysis to release adhesions that had formed following the 1st surgery and improve the pain.
On the 18th of May 2005, I went in for my second surgery and the findings were as follows. Left tube – tortuous, right tube – twisted, right ovary – stuck in fossa and Douglas space – total obstruction. The procedure description was Adhesiolysis, Ovariolysis – right side, Adhesiolysis between the uterus and the intestines and Left side Salpingolysis. The doctors equally informed me that as a result of all the damage to the reproductive organs that I would be unable to conceive naturally and would need assisted reproductive techniques. There I was in a foreign land, trying to get a graduate degree and being saddled with such life altering news and still in my 20’s. Subsequent investigations of a Hysterosalpingography (HSG) confirmed a distal tubal block on both sides without presence of peritoneal passage right or left (that in plain English meant the tubes were blocked).
At this stage I could do nothing but hunker down and do what I had always done in times of distress – call on my God. Time will not permit me to go into full details of all that happened but suffice it to say that my whole family rose up in solidarity to call on God and besiege Him on my behalf. Shortly after my arrival in Europe, I had met a fellow Nigerian legally resident and on work assignment from home and we had become fast friends, he was one of the friends that supported me through out that period. About a year later, that man Nnamdi Obiagwu asked me to marry him. I was convinced he was nuts and I wondered who in their right minds will, with open eye ‘buy wahala’? But he remained sure of his decision and reasons and after weeks of prayer, consultations with a lot of people including the fertility doctors we were convinced we could with the help of science have kids through In Vitro Fertilization.
We began preliminary qualification testing’s for IVF and worked out a schedule for commencement of the hormonal injections I needed to start taking. But God was determined to have the final word in that matter cos, the day I was supposed to start with the injections, we discovered quite by accident that I was pregnant!! We were all stumped; no one had seen that one coming. We were all confident that by Gods grace the procedure was going to be successful at the 1st trial, we had even picked out the name of the baby in advance thanks giving to God. But no one had counted on it happening this way, IT WAS A TOTAL MIRACLE. God had proved Himself as the Master physician and confused the specialists. Thinking it had to be an ectopic pregnancy, they had us wait a couple more weeks till it was advanced enough to ascertain the location and to the glory of my God, he was smack in the uterus.
My shocked fertility specialists released me into the care of a regular Ob-gyn, who monitored me ever so closely cos I still had recurring fibroids growing along side the fetus. I had the most uncomplicated gestational duration despite the fibroids and 38 weeks after Chukwuebuka Tobechukwu Obiagwu was born via C-section, hale and hearty. I returned to Nigeria triumphant, graduate degree in International conflict analysis, husband and baby in tow. It was a long way from where I had started from years earlier. I was indeed a beneficiary of God’s extravagant Grace. I was content and ready to get back into the swing of things, follow up on my career advancement and love my miracle baby and husband to death. But this was not to be.
Bubu as we fondly call my son was the easiest baby ever, he met and exceeded all his developmental milestones on time (and I was checking cos i didn’t know if i would be able to have another one , every month I downloaded the targets and checked up on him consistently), he walked at 10 months, had perfected speaking well (appropriate for his age that is) by 11 months, was very social and cheerful. I ensured I went for all his well visits and that his every need was met. Shortly after his 1st birthday, he started presenting with gastro- intestinal issues – severe constipation that would not go even with dietary changes; so much so that the doctors had him on lactulose to help him move and regularize his bowels and also with monthly or bi-monthly bouts of upper respiratory tract infection requiring medicating with copious amounts of broad spectrum antibiotics that was blamed on the fact that he sucked his fingers and was therefore constantly exposed to bacteria. We consulted the doctors about this and other concerns we had about things we were reading in the media following our persistent research about his gastro –intestinal issues, its possible causes and a possible link to one of the childhood developmental disorder – autism, but they allayed our fears, totally convinced that such developmental disorders were always onset at birth and that he was right on track meeting all his milestones. He continued to thrive though till a day after 15 months his well visit, he fell seriously ill. About two weeks following his discharge from the hospital, I noticed that it appeared like he was stuttering, another two weeks after, his words were beginning to sound quite jumbled up, and it appeared like he was exerting some force to speak. I went to the hospital but the doctor felt that there was nothing wrong with him. I went back again after a while but the doctor thought I was a being bit too anxious and that my anxiety might actually impede any progress he was making with his speech, he advised that we meet again at 18months to review.
At this time convinced that something was wrong and instinctively suspecting what it could be, I made the decision to resign from a new very well paying job I had just gotten to focus on working with him personally after school just to ensure that the brain was constantly stimulated. Like we didn’t already have enough to contend with, head trauma was added to the pile, one evening after taking a bath, I carried Bubu into the room to get him dressed, as I pulled on the wardrobe door to get his clothes, the heavy door came of its hinges and hit him on his head leaving a scar that remains till date. Wahala!!
We went back at 18 months and by that time he had almost lost all his speech. We were advised again that some male kids were just like that and would eventually pick up what they had lost; we agreed to give it till 24months and see what happens. We went back at 24 months and now the doctor was equally as confused cos he had been taking care of the child since he was born and had documented all his developmental achievements, we also let him know that we had noticed a reduction in his social interaction and he would sometimes stare at the curtain rails in the living room but other than that he was just as rambunctious as he had always been, easy to work with, no tantrums or any other sign really that anything else what wrong. He was very engaged and displayed levels of intelligence in certain areas well beyond his years.
At this point, we were referred to a Speech Language Pathologist who assessed him and offered a diagnosis of PDDNOS- Pervasive Developmental disorder Not Otherwise Specified. One of the five developmental disorders grouped under the Autistic Spectrum Disorders. She gave us advice on what steps to take and counseled that we equally get an audiological examination at the Army audiological center in Yaba to make sure his hearing was unaffected. We did and his hearing was normal. Time will not also permit me to recount every event that happened up to this time but suffice it to say that this is how I was once again plunged head first and neck deep into adversity. But I had been here before and this time I was not ready to fall back and listen to any body any more. My own triumph over fibroid and infertility had taught me a thing or two. I plunged my self into research, to understand what was happening to my son, and what I had to do to get him out of it. Knowing that every step of the way I was walking this walk with God. I sought his face constantly, I tarried, I waited for clarity on the way forward and I walked in the path that I was led to.
All these led me abroad again where I was able to run a range of tests which showed that Bubu had co-existing conditions of severe gastro-intestinal complications, poor thyroid function, possible mitochondrial dysfunction and confirmed mercury toxicity amongst other things. I was able to identify that The Redox-Methylation Theory best explained our autism subtype and I subsequently acquainted myself with the bio-medical view and protocol for working with children on the spectrum- a whole body approach that encompasses detoxification (natural for me), supplementation (based on need), dietary intervention and therapy. I added prayer and praise into the mix and returned to find us the best suited centre for his therapy totally convinced that Chukwuebuka will be completely recovered and restored. I understood this to be a calling for me and I quickly realized by my own experiences with not so privileged Nigerians I had encountered as we went through the system here that we, as a nation have a whole lot to do to break down the walls of ignorance, shame, stigmatization and denial surrounding having and caring for children with special needs. We have to be the change that we desire.
After months of prayer and defining my vision and mandate I started a nonprofit organization called The Child Restoration Initiative an educational advocacy and support group for children with developmental disorders.
Shortly after my son, Bubu was diagnosed, we casually mentioned that we needed a playmate for him and again God proved himself and showered us with more extravagant grace, we discovered that we were expecting AGAIN, after three years of not even trying Onyedikachi Ifeanyichukwu Obiagwu was delivered to the utter shock and amazement of my doctors despite being in an unstable position from conception and being surrounded on all sides by 3 large fibroids and on the one side, a cyst. Five years after his initial diagnosis Bubu is doing exceptionally well, he has gotten speech back and is making continued progress and well on his way to complete recovery by the grace of God. He is the hardest working child I know and he does it all with a smile on his face and a spring to his steps even on the bad days. He loves music and maths, he taught himself (at age 3 no less) how to play the keyboard and is very adept on the computers. He continues to amaze us each day. He inspired me to start this NGO; we still have a little way to go but, we are sprinting to that finish line with joy in our hearts and gratitude to God for His Grace which sees us through. Just watch out.
SOME LAST WORDS:
To the couple or woman that has been told she can’t have a baby, I have medical proof from 3 continents that I should not have been able to conceive kids naturally but I did, TWICE by the grace of God. To the family that have received a diagnosis of an autism spectrum disorder, I say EARLY INTERVENTION IS KEY. There is a hope for recovery but it takes an acceptance that there is a problem and an undertaking to do the back breaking work needed; a whole lot of love and affection for these children and a whole lot of prayer. God has done wonders for me and He can do it for you. I know parents with recovered children in this country. I don’t care what anyone says about the possibilities of recovery; God has the final word and your ultimate goal as a parent is to do your utmost to ensure that your child leads a healthy, hopefully independent and successful life. To the society I say let us work together to positively change the lives of people living with developmental and learning disorders in our communities. Volunteer and spread the message EARLY INTERVENTION IS KEY.