Namrata Patel
a. How does it feel to be the parent of your child?
As a parent, my husband and I live in the guilt for creating such a painful life for our daughter, Aisha. The initial hurdle of accepting the diagnosis was difficult for both of us. My daughter inherited a sickle cell gene from each parent and therefore has hemoglobin SS disease, also called sickle cell anemia. The life-threatening nature of SCD illness crises implies a particularly complicated illness for us as parents to manage. We live with constant worry about protecting our child from illness. As a mother, I cry each time as I helplessly watch Aisha suffering with pain from sickle cell crisis. Major painful crisis requires prompt medical treatment and days of hospitalization. There have been days when the pain usually lasted from hours to a few days and it gets harder to bear, leaving her mentally drained. Believe me, it’s the worst feeling of watching your child cry in pain and even more worse when she innocently asks for explanation of "why me mom? Why do I have pain.” Seeing her in so much pain makes me blame myself, and make me wish if I could do anything at all, to take her pain away.
Another major concern is preventing her from all possible infection. If it was possible my husband and I would be around her twenty-four hours guiding her where to go, what to touch, what to wear or what to eat. It was a painful sight to watch my little girl on the hospital bed, getting blood transfusions to help raise the blood count until her body started making red blood cells again. Headache, fever, lethargy, paleness, fainting and pain are part of her life now. We are constantly battling the fear of the unexpected appearance of stroke or any such dramatic symptom which would lead to the need for regular blood transfusions.The effects of sickle cell crises on different parts of the body can cause a number of complications. As parents, we try to take all possible precautions we can to prevent Aisha from facing an “anemic crisis.” It’s become our habit to make sure she has her medications and fluids with her all the time. I am so over protective of Aisha that I am really concerned of the day when my daughter will hide her pain from me, so that she would not miss "important teenage social events" because I would not let her out until I was sure she was well. At present even the thought of her being sick, compels me to stay by her and immediately put her to bed so she can rest, and of course, the liquids & Tylenol start flowing too. As parents, we try to keep her as happy, positive and stress free as we can. We share regular conversations everyday to help her avoid overexertion and stress. While it is difficult for us to consider the fact that we will probably lose our child at an early age (life expectancy is about mid 40's), we try to live to the fullest and appreciate every moment of the precious time we share with her.
b. How is your child developmentally the same or different from other children at the various ages?
As a child, she still does the things other children do, but she cannot do them at the same extent as other Children. Not wanting this to be an excuse, she still tries and like ever so often she goes into a crisis. During any physical activity, she gets tired more quickly than others, as her oxygen cells will only allow so much in-take, and sometimes as she tries to extend her goals then it takes her a long time to rest and get back in. The feeling of pain, and humiliation of her body not giving way, to let her do what she wants to do, surely does impact her view of life. She is all of a sudden attacked by excruciating pain. And there is nothing she can do to stop it. All there is left to do is get to the hospital as quickly as possible and hope it's not as bad as the last time.
Being affected by sickle cell disorder, the impact of the condition on her education is far reaching. Aisha, who is ten years old, is physically disadvantaged and as a consequence of this is more likely to rely on educational achievements. Compared to other children, my daughter is slightly below average for measures of processing speed, working memory and other cognitive functions. This is mainly because of her many missed days at school due to ill health and hospitalization. Unlike the other children, Aisha cannot take up any strenuous activity as she gets easily tired and weak.She is fond of dancing, softball and hiking but we have to set limits for her as she cannot be an active participant in any of these physical activities. She gradually found that the pain of a sickling crisis accompanies participation. The emotional and psychological implications are significant as feelings of frustrations often overwhelm her. This is often seen when she cannot be part of the different activities that her friends take part in. The effect of sickle cell disease is not only physical, as psychological and social factors have major influences also on her health.
However, my daughter is a good sport, she loves to hang around with friends and family and we often go to watch games of her choice. She is a very helpful daughter and assists me in all my household work. I always look forward for our times together at home as I get chance to appreciate the gift of having her in our life. My daughter shares her fondness for video games and computer with her father, who spends good time teaching and playing with different gadgetry items. Being daddy’s girl, she often claims to be an electronic engineer just like her dad. As parents we can just support and hope to see her dreams come true.
c. What professionals/agencies do you deal with? What services are available to you and your child?
There are a couple of resources that have been of great help to us. The agency that we deal with the most is Sickle Cell Disease Foundation of California, whose parent support group helped us meet other parents of children with sickle cell disease, share experience and learn from each others. The Parent Support Group provides us with great opportunity to share the resources, successes, challenges and feelings that are unique to families of children with sickle cell disease. We constantly access this link due to their abundance of resources at our constant disposal, which provides all possible information relating to Sickle Cell Disease, Health Insurance Programs, Medical Centers with Sickle Cell Programs (Southern California), Child Care Resources, California State Programs, Los Angeles Resources as well as Federal Resources. The SCDFC provides a variety of program services and activities (like the Pain Education Program for adults and teens with sickle cell disease; Comprehensive Education & Social Support Program for adolescents & young adults (15-18) with sickle cell disease; Provides computer technology, tutoring, educational resources and sickle cell disease information to clients and their families; Specialized summer camp for children (8-14) with sickle cell disease; An education program for parents of infants & young children (0-5) with sickle cell disease and Overview of programs and services available to the medical and general communities.) that assist individuals and their families in coping daily with this chronic illness. The Sickle Cell Foundation of Orange County, Sickle Cell Disease Association of America and the U.S. National Library of Medicine & National Institutes of Health were some of the great online resources that helped us receive a wealth of information about Sickle Cell Anemia. CHOC was another great resource that helped us find Aisha’s current pediatrics; Dr. Puthenveetil who is board certified and specialized in hematology-oncology.
d. How did you find out about the above services?
Aisha’s old pediatrician provided us with a list of resources when Aisha was diagnosed with Sickle Cell Anemia during the newborn screening tests. The above resources provided us with all possible information and helped us to make crucial decisions in our life. Medicinenet.com was a useful resource that introduced us to Aisha’s current hematologist. I came across CHOC and SCDFC on the internet, which has been a blessing in disguise! I could not ask for such great support, and I feel like Aisha has learned a lot about her disease and has gained insight to fight and cope better with pain. We constantly do a lot of research to make sure that Aisha receives everything what she rightly deserves.
e. What financial burden, if any, are you experiencing?
Sickle cell Anemia patient requires a lot of medications and hospital visits. Parents with little or no support, living in unsuitable accommodation would perhaps find it more difficult to cope with an affected child but by god’s grace we are financially stable and not experiencing financial hardship. However, if it wasn’t for the good stable income from my husband and the supporting insurance plan, it would have been very difficult to provide medications, paying for frequent rehospitalizations and especially coping with the high expenses of blood transfusion. Social Security benefits have also helped with costs associated with overall health care, prescriptions, emergencies and even transportation to and from doctor appointments. We are fortunate to have friends, family, and community services like the SCDFC over all the time to help with encouragement, treatments, and financial support.
f. What other information do you want to share?
After the first blood transfusion of my daughter, we have been overly protective about protecting Aisha from any sort of infection. A healthy spleen helps protect the body against infection by destroying bacteria in the blood. When sickled cells get caught and damage the spleen, the organ can't perform well. As a result, children with sickled cells are especially vulnerable to infections, especially from streptococcus pneumonia, and they're less able to fight off infections once they occur. So it's important for parents of children with sickle cell disease to be on the alert for signs of infection, including fever and unusual symptoms such as vomiting, rapid breathing, cough, lethargy, or pain. Preventing complications with sickle cell by taking vitamin folic acid (folate) daily to help make new red cells; daily penicillin until age six to prevent serious infection; drinking plenty of water daily and regular checkups; have helped us protect our child from recent crisis. Sickle cell anemia is a lifelong condition. The recent research has also shown that bone marrow transplant can help cure the disease but it surely comes along with some risk factors. Parents must not conclude anything once the child is diagnosed as the outcome for each child varies depending on the severity of symptoms and other complications. Some children can be active and independent while others may require more treatment and supportive care. For us, we work closely with Aisha’s doctor to learn how to help her in all possible ways. I intend to live every moment with the goal to always see that beautiful smile on her face.
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