The mothers of children with down syndrome gathered to share their stories of the pain and grief they experience when finding out their child had the genetic mutation.
Parents are torn between shock and denial upon hearing the news that their unborn child will definitely have Down Syndrome, but what makes matters worse is the way in which doctors are informing the mothers. Umm Yasmin shares her reaction to when her doctor told her about her child, "I was in a state of shock when I was told that a chromosome malformation existed in the baby I was carrying and I needed to do some tests and take some pictures to confirm it. However, the most shocking part was when the doctor told me there is no need to examine the chromosomes of my 100 percent 'Mongolian' daughter. "
"I gave birth to a child with a heart defect which made it necessary for her to undergo surgery in the hospital. I found out from the nurses and staff at the hospital that children with down syndrome are capable of leading a normal life with rehabilitation and special care, however this information contradicted with what my had doctor told me. I began searching and investigating to find more information and a place to receive help, but the centers I found refused to assist me because she was only 10 months old."
Umm Yasmin turned to the Ministry of Social Development to assist her in creating an institution that would help her daughter, but she did not find any that would serve the area she lived in. At the same time, she could not afford the high fees that private centers demand, despite the Higher Council covering part of the fees. She said, "I had to search online to find some answers and I came across a 'challenge of disability' forum in which many shared their experiences and stories in dealing with this disability. One woman's personal story in dealing with her son taught me how to help my daughter."
Um Rami learned of her daughter Farrah's syndrome when she was in delivery, despite going to her doctor for regular visits during pregnancy. She explains, "I did not understand or hear what the doctors were saying about my child having down syndrome while I was giving birth, I was in shock and had internal bleeding, especially because I had been visiting my doctor throughout my pregnancy and there was no defect during that time."
Umm Rami adds, "For me it was a huge shock and I was in denial. After I realized that it was not this child's fault and the will of God, I started to deal with it. The effort of caring for a child with Down Syndrome multiples and I know that she will be accommodated less than others."
Umm Rami stressed that her daughter has not benefited from the seven years she spent in the rehabilitation centers that are available. Centers that specialize in this type of disability have deteriorated or don't exist which has committed Umm Rami to take matters into her own hands and care for Farrah herself, "My daughter's state is very difficult and she does not have the ability to complete her education, but we have taught her to walk, dress, care for her own personal hygiene, and help me with things at home."
On the topic of having her daughter get a hysterectomy Umm Rami replied, "The choice of giving our daughter with down syndrome a hysterectomy crossed our minds, however we felt that the health dangers of the operation were too great and we decided against it. This doesn't stop me from worrying about my daughter or dispel any of my fears that she will be assaulted, I never stop trying to protect her."
Mothers of children with mental disabilities suffer the hardships of caring for them, and Umm Amjad, whose youngest son Mohammed had down syndrome, was no exception. Due to the lack of academic establishments for him, she decided to enroll him in high school. Umm Amjad explains, "I didn't know he had down syndrome. Forty days after I gave birth my doctor notified me and from that moment I began looking into the matter seriously. I cared for him by massaging his body with oils daily, joining him at bedtime so he wouldn't feel alone, and spending every minute I could with him."
Umm Amjad explains, "Nineteen years ago there was no adequate guidance or awareness of this disability in the media. I attended any courses or meetings I could for assistance, even if the information was little. After my son turned one and a half he learned how to use the toilet on his own. He learned from his seven siblings and began memorizing words and I would correct his mistakes. I was never ashamed of him in front of people. When he was two and a half, he began learning how to read and write and now he is on the path to his towjehe high school certificate."
Umm Amjad emphasizes the important role of doctors in helping parents with good advice and guidance to care for their children and ease the long road of their upbringing.
The head of Monitoring and Rating the Supreme Council Affairs for people with disabilities, Mohammed Al-Zubaidi commented on the importance of adhering to scientific terms to avoid the negative labels that have characterized this disability, "The prevailing label of this disability has been described as 'Mongolian,' stemming from the previous ethnic theory that was proved wrong by biology which found that this mutation does not have any relation to ethnicity. The terminology should be scientific and the term 'Mongolian' separates people with down syndrome from the rest of society. The modern terms should be used to stop this negative label and their differentiation within our society."
According to Al-Zubaidi, the prevalence of this disability is about1 in every 800 children and adds, "Down Syndrome is a type of mental disability and the Supreme Council offers services through a range of programs. The first includes screening programs and early intervention, followed by rehabilitation programs, education awareness, and support programs within communities."
Al-Zubaidi stated, "We are implementing new provisions in our centers and special education programs to ensure better services for people with disabilities, in particular the centers for people with mental disabilities. The Council issued new standards to improve the quality of services and staff in these centers and provide better services for people with mental disabilities."