A BabyLove Network Interview with Adam Hussein Adam, Independent Social Development Consultant.
BLN: Tell us a little about your daughter?
Adam: My daughter’s name is Nadya. She turned 7 years old on 31st March this year. She’s really special and is the most precious thing that ever happened to me. My life has never and will never be the same since she came into it. I love her to bits!
BLN: Tell us about her health condition?
Adam: Her condition is not properly established. We have heard and had different diagnoses from various different quarters, all different. At one time we were told it is toxoplasma of the eye; then congenital glaucoma, then cerebral palsy, autism and muscular dystrophy; in the end we found that her neck was dislocated from birth causing her brain injuries and atrophy.
BLN: How did you discover it?
Adam: From birth, she developed jaundice and was hospitalised immediately for 7days. We then noted that her left eye was slightly bigger than the right eye. Therefore, we kept searching for answers on what could be causing the problem. When she was 6 months she had a scan and the doctor concluded that it was toxoplasma (infection caused by rodents). When she turned 9 months we took her for a second opinion in a tropical disease centre in the UK. What emerged was that Nadya did not have toxoplasma but had what was called congenital glaucoma, which meant that her eye was under heavy pressure and she was extremely short-sighted. As such she underwent an emergency surgery of the eye to release pressure on her left eye. She was subjected to several tests which we dutifully went through and after six month of different operations she returned to the UK for review and we were told the girl had muscular dystrophy a condition without cure, marked by progressive weakening and wasting of the muscles. So, before the age of two, Nadya had missed many milestones.
BLN: Tell us about the misdiagnosis and what its effect on you and your daughter?
Adam: After multiple misdiagnoses, I sent a picture of Nadya to a friend of mine who is a homoeopathist. It was from the picture that she identified that her neck was dislocated. She did it based on her personal experience as she had a child with the same problem. To date Nadya cannot speak and she only utters some words; cannot walk but crawl and needs aid in most of her functions.
BLN: What has her treatment journey been like up to where it is now?
Adam: From 2010 we have sought a myriad treatment modalities including: acupuncture, acupressure, Reiki, Pranic healing, physiotherapy, speech therapy, chiropractic and homeopathy. All this is in addition to allopathic medication she takes for her eye pressure.
BLN: What are your feelings towards the medical team who performed the delivery or those that misdiagnosed her?
Adam: I hold no bitterness about anyone. Additionally, I strongly believe no one wakes up and consciously intends to harm others. Everyone does their best under their circumstances and based on their knowledge and what they are aware of. It makes sense to be angry with whoever delivered my daughter, considering the delivery was not done in a bush hospital right? And I would be justified if I complained about those who misdiagnosed her, but I harbor no feelings of ill will. With hind sight I acknowledge that they were all working for good and doing their work well within what and how they knew their jobs.
BLN: How has the condition affected your family as a whole?
Adam: It has transformed my family into health consciousness. We have transformed the way we engage with food and nutrition. How we source our soaps, perfumes and scented stuff has changed. However, on the down side, we cannot just have a holiday we have to think how to handle Nadya.
BLN: How has Nadya shaped your experience of fatherhood?
Adam: I have discovered my feminine energies. I am more calm, compassionate, caring, giving and loving. Before her, I had no conscious experience of being a father. With the coming of my daughter and the need to assist my wife and my other daughter I have had to make more changes in how I engage life. I stay at home more. I share more time with my daughter. Additionally, I changed my profession from caring for large groups to focusing on individuals.
BLN: What is your daughter’s relationship with the rest of your family and them with her?
Adam: My daughter is a centre of attraction. She relates well. She has one sister who cares deeply for her. As parents we provide a conducive environment and space for her to grow into whatever her destiny is. We also offer support for the management of her conditions.
BLN: Tell us something about Nadya that you love the most?
Adam: Nadya is a fighter! At her age she has seen more of hospitals than I have done in my entire life. She has been subject to many more treatment modalities than I have ever done. Nadya keeps going for as long as we parents are there by her side. She is everything I am not. I admire her. I also admire her fighting spirit and her will to keep going. She’s an inspiration.
BLN: What are the most exciting milestones she has achieved?
Adam: From a point where she could not sit to developing strong back, crawling and socialising with other children and also enjoying the company of others. Being able to hold a cup and take a drink. Although these came through delayed, they are all milestones we cherish and celebrate.
BLN: What would you advise parents or guardians with children with special needs?
Adam: Your child is your responsibility first. The doctors, teachers, house helps and all other support are just but support. Being lay about your children even those without condition therefore is non-defence. Invest in knowing as much as you can about your child. As a parent you can deliver care with more love and compassion. You are their first line and best possible source of support.
BLN:. Tell us about your work to raise awareness about birth defects caused by negligence?
Adam: My greatest endeavor to create awareness this far, has been to conduct a study on the burden of care for the primary caregiver to children with autism spectrum. The purpose was to support efforts of institutions already working in the mental health sector to mount advocacy towards receiving necessary support from State authorities in the health and education sectors. The other way has been sharing my experience to enlighten others.
BLN: What can the government and hospitals do to prevent such incidents?
Adam: Hospitals and the teams that work there are committed to the wellbeing of their patients. To operate in the contrary is dishonesty. There also exist a need to continue learning and gathering alternative experiences. Every truth is relative to another; medics have to expand their horizons beyond their tried and tested space. To stick to what one knows is tragic because it’s limiting. The government has much to do. Already, it offers some form of social support to those with disability; which is wonderful! The government can also supplement education of those with disabilities. It can also give emotional and psychological support to caregivers. The quality of the life of children with disabilities is tied to the well-being of their caregivers. The government can also create tax waivers for caregivers of such as incentive to bring them out in public. There is so much to do and we must continue to advocate for change and the necessary support.
BLN: Tell us about the initiative to bring together stakeholders in the area of children with disabilities?
Adam: I am aware of different organizations, societies, alliances and groups formed by parents and other stakeholders to address issues of children with disability. I offer support to existing establishments in their efforts. There are many institutions with good intentions, but do not have the voice or the technical know how to inform and transform policy spaces. It is not about me but the children, supporting the process that helps them is important. It is important to me and to the cause.
BLN: Anything else you’d like to share about your daughter and your parenting journey?
Adam: The journey of parenthood is not for faint hearted people. To bring forth a child is to dedicate 25years of nurturing. There are few similarities between parenting one child from another. Parenthood is not an exploratory journey – you have to be fully present. Parenting cannot be explored with limited awareness but through continued learning and adjusting. Raising a child with disability requires major dedication. The upbringing of a child with special needs is a major test too. Every aspect of one’s life is tested – emotionally, psychologically, social and financially. Knowing nothing comes your way that you cannot handle, getting on with parenting without second guessing is important. It will be helpful not to compare your parenting with others or compare the progress of one child’s to another child; life unfolds differently for all of us.
BLN: What would you want Nadya to know if she reads this article when she’s older?
Adam: That I root for her! I stand by her greatness.