By Henry Uche
For every parent, the birth of a child brings joy, but for the Patricks, that was not to be. Instead, pains, anguish and lamentation had become their lot just as the doctors told them that their new baby, Ezichi, had a hole in the heart.
Though this medical condition is not rare, but for little Ezichi, hers has become more complex even after a surgery in India, two years ago.
After her Indian medical assistance, Ezichi, 5, hasn’t had a reprieve. Neither has her mother’s agony lessened.
In this chat with Daily Sun, the distraught mother said that little Ezichi cannot talk, walk, cannot hold anything, neither can she respond to changes in her environment. In frustration, Ezichi’s father got tired of the situation and abandoned both mother and child. All efforts by her mother, Christiana Nwakego, who single-handedly bears the brunt of taking care of the baby has proved abortive.
Living with this child and the stigma associated with the condition is like punishment for Christiana Nwakego. She desperately seeks for a special facility for her physically challenged child and says that if all fails, she would be forced to look for her father and dump Ezichi with him. So, she, too, can breathe.
What is it like to give birth to a child with a congenital hole in the heart?
The news came like a shock to me. One day, my little girl, Ezichi, was sick and we took her to the hospital and the doctor said there was a strange sound attached to her heart beat. He referred us to LUTH for proper Echo Scan having suspected that something was wrong with the heart. Then, we went to LUTH after she was discharged from the hospital. We booked the Echo Scan and waited for the appointed date, after the Scan, the result said that she has an ASD, which indicates a hole in the heart. We started Cardio Clinic from there and we were told that her medical condition required surgery in India because she was too tiny and doing it here in Nigeria would be too risky for her.
So we keep pushing and waiting, seeking help from different places till we got from ‘Gift of Life International”. We flew to India after the excruciating experience of getting passport and Visa from the passport office, Lagos. It was like hell while running up and down to get the surgery done.
Upon your return from India, what were your expectations from the baby and what went wrong?
We visited the hospital (LUTH) after she returned and the doctors gave a follow- up appointment for proper healing. After the heart healed, we were booked for Neuro clinic because of the brain and her poor development. That was when we also discovered that hole in the heart issue is nothing compared to the challenges she has as a special needs child or child with disability. I was also instructed on how to feed her after seeing the dietitians. I expected a lot of changes from her thinking that the problem has been solved through surgery. Little did I know that there are more to it. She’s always visiting the hospital because of sickness and mostly experiences seizures till date.
Since she displays abnormal behavior, what are your efforts so far to help her live a better and normal life?
I have been trying to make sure that she joins in the therapy that suits her condition like the physiotherapy, occupational and speech therapy but she was unable to complete them because the father got tired of sending us to the hospital. He complained of not having enough for transportation. We dumped her at home but it didn’t end there. I did the little therapy I know I can from home. It was frustrating but it paid off a little for she learnt to stand with support and after which she managed to move her legs, for a while, though with fear. I have been trying other things too that seems too hard for her to comprehend, like chewing, waving bye and also grabbing things with her hands. I also pray to the Almighty God. All these are parts of my effort, while I seek either government or private facilities/ homes that can receive her.
What support have you received so far?
The support we received came like a miracle. That was when some good Samaritans sponsored our trip to India, took up the surgery bills, feeding and accommodation. We also raised money for her online with some fliers. That was where we also got the funds to settle passport and Visa fees. And sometimes we get other little cash support from some organisations and individuals that heard her stories and feel like assisting. All these supports have really helped us, especially for hospital bills whenever she is hospitalized. But I am really fed up.
Have you been able to work under any employment, do any business, or further your education?
No. This is because I wasn’t doing anything since I had her and due to her condition, I have been trapped, sort of, and all indoors with her, caring for her and hoping she becomes better one day so that I, too, can have my freedom.
I was once employed as a primary school teacher but have had to stop work within one month so I could take care of her. And that is becoming endless. Her medical situation has dampened my zeal to search for work because I can only imagine the shame and stigma that would come with it. I choose to help myself from home in any little way I can.
Ezichi is five years old now. Has she been able to go to school all this while?
That was another big challenge. It has been hard to find a school that can accept her. She started this year close to her 5th birthday. She was attending mainstream school because there is no money to send her to a proper school or facility meant for special needs kids. Her activities in the day care are centered on just eating, and sleeping. She returns home and nothing more.
How has this agony affected your own health?
Now, I know what is called trauma. My daughter’s condition has affected me in so many ways, physically, mentally and psychologically. God knows I need to be strong for her that’s why He keeps me going even, with the frustration that comes with caring for her. Sometimes, there are so many negative thoughts that go on in my mind. But I am glad that it has not got to the point of committing suicide or even killing the child.
The truth is that I am tired of this ugly experience. I just need a home that will adopt her. I have been living her life since five years now and staying indoors with her all these years. I had plans for myself but I can’t do anything. I don’t work for any organization. I am not in school. I don’t do business because I can’t leave her alone even for a minute because no one can tell what would befall her when she’s alone since she can’t withdraw if she sees anything unfriendly. The days I managed to take her out to sell some chips, I saw hell. It’s either seizures or one form of body reaction that would make me abandon whatever I do to attend to her. I have told God to end her suffering once, by taking her life, I don’t wish to do that myself, though her condition is a thorn in my flesh, but I can’t take her life because she’s God’s creature.
How do you cope with the child?
Coping with the child is like hell with the stories I have heard about hell, mostly whenever she’s ill, before now I blend whatever thing that goes into her mouth because she doesn’t know how to chew, even till now, I just stopped so I can train her on chewing but she still can’t but she eats ordinary food but not hard ones. Packing poops and urine has become normal life style with me. I don’t think I have had a reasonable sound sleep since I gave birth to her. The frustration is a real one for I get serious headache that made me start cutting my hair every time. I regret ever getting married in the first place and becoming a mother. I preferred when I was single. I shed secret tears every day. To some point, I regret everything about life.
Where’s the father?
The father got tired of us and stopped coming home. We entered another storyline of living alone. He turned me into a single mother of a child with special needs. I hated him mostly for that.
He is reluctant with everything that concerns the child right from time and doesn’t see the child as his own. When he was with us, we fought every day because of money to feed the child. At some point, I chose to forget him and focus on seeking help for the child and myself.
What about the stigma? Can you talk about it?
The fact that I don’t live my real life but have been living the life for my child for the past five years is agonizing. The shame and disgrace I get whenever I go out with her with people staring and jeering at us especially when she screams and acts like an infant is incomparable to anything I know. The pain of seeing mother’s with their healthy kids makes me feel like I am the worst sinner on earth who is paying for her sins.
There are many instances of stigmatization. At different occasions, I had felt like the earth would open up and swallow me, because my child doesn’t behave like a normal human being. The truth is that I am tired of life.
If you can’t find a proper place to put your daughter, what do you intend to do?
If I can’t find a proper place to put her, I will just have to bear the pain of turning my back on her and leave her with the father. It is not going to be an easy thing for me to do but taking her with me will do her no good for I don’t have what it takes to give her a better life. Having to leave her with the father might be a death sentence for her also but that’s my last option.
What has life taught you with having this kind of child with special needs?
Life has taught me a lot. I have come to understand that life can happen. What I never expected in my life is what I got. It made me go deep into pregnancy concerns and its attendant issues. I dare say that it’s not just about getting pregnant, pregnancy management matters a lot. Even, the health of the mother during pregnancy is very important to look out for and so many other sundry issues associated with getting pregnant.
