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Tuesday, May 21, 2013

SUPPORT SICKLE CELL AWARENESS - 4

In the last post, we discussed on the patterns through which SCA can be inherited and on how to detect either before pregnancy or early in pregnancy how to determine the genotype of the offspring before birth. With the risks involved, poor and probably unavailable facilities to carry out the process, and where available is highly very expensive for an ordinary African citizen to afford, there is also the issue of for and/or against abortion, tradition, strong headed men, and the list is endless. So far the best solution will be for the couples to go and have their blood tested to know their genotype. This saves a very great deal of hurt, pain, regrets and the likes. Lakin, knowing how we humans 'don't think', sometimes knowing the genotype does not stop us from eventually (or not) being a contribution to the woes of the sickle cell community.
I use myself as an example; I have a 5 year old daughter and her genotype, due to the Goodness of God, is HbAS. Her father is HbAS and I'm HbSS ...... okay calm down please! I knew his genotype before we got married, I was the one that asked him to go do it! However all the "yori-yori" and "I have faith in God" was put aside when I found out I was pregnant. I was scared and I scared the life out of him too. He didn't know how it felt like to be living with an SCA patient and for the first  time he experienced it in 4D. I'm guessing it was among the worst times of his life; he donated blood twice to me, I would wake up in the middle of the night with so much pain from which I end up spending a week in the hospital given intravenous fluids and being transfused. The following week I would be home and after that I would be back. We had a time-table! I get admitted on Wednesday, return home the following Tuesday and be back again the following Wednesday. Life was a swing! Even the O.B.G.Y.N wards knew me...I had a special bed at the very back where it was cleaner and quieter! Okay! Reality checks: I was suffering in two different degrees; physically and psychologically. Some other time for the complete story.
Now that we know some people are stubborn and still get into offspring-bearing-relationships that could give rise to sickle cell patients, the next step is to know what to expect, how to handle it, who to seek help from and all the right/helpful things that will assist the patient. Scolding and saying "why did you?" is not going to change the situation.
You decided to go ahead with your marriage after knowing your genotype and knowing each of you is a carrier of the sickle gene. You have kids. Among them could be an HbSS child. What do you know about sickle cell anemia? How do you help the kid be healthy and able to cope with the "stress" of childhood? How do you keep yourself prepared for all the unexpected pain attacks? These are some of the important questions I hope I can help all of us understand.




The Know How/When/What about SCA patients
The first thing every parent, relative, friend and community need to know is exactly what Dr. Kenneth Enwerem of Omega Cares Foundation said describing sickle cell patients "They are not abnormal. They are special kids with a special condition, requiring special care".
Know also that the child did not bring it upon themselves but was as a contribution from both parents.
Know that the child is experiencing pain caused by the SCA and hurt/sadness from seeing their loved ones running around not knowing exactly how to ease the SCA pain.
Know that as younger kids they are likely to experience pain more often than later on in life; in other words, the intensity reduces as they get older!
Know that as kids, we cannot stop them from playing but we as parents and adults can monitor the hours they play and the sort of games they could participate in.
Know that it is your job as a parent to make sure the teachers and friends know of your child's health condition. This is so his/her activity can be monitored while at school also.
Know that you cannot stop the crisis from arising but you can help in easing the pain when it starts.
Know during the pain, all your kid can think of is how to get rid of that part of his/her body that is aching so they get pretty much impatient/irritated with any suggestion to keep calm and/or relax.
Know that water is indeed really your child's best friend! Encourage them to drink as much as they can in a day. Some may still bed wet till a really grown age but somehow it beats having to be woken up by a scream late into the night.
Know that as the parents you are solely in charge of making sure your kid takes his/her medication accordingly, eats healthy (even if most of the time their appetite is poor) it doesn't have to be much at a time.
Know that you can tell a lot through the color of your child's urine. Be very observant! You should also notice the color of the conjunctiva; is it very much jaundiced (yellow/green) or just a little?!
Know that they want to feel and be like the other regular kids but cannot be, not because they are less talented or unintelligent, but because physical stress wears them out faster than you can finish calling out their name!
Know that your child can still learn other easy fun less physically demanding activities such as riding a bicycle, swimming (but not for prolonged hours) and short distance walkathons. These are the few I can permit myself to mention.
Know that your child may be physically restricted (due to stress) but they are intellectually very active so encourage them or better still get them into the habit of reading and writing, playing creative games too. They are still fully functional.
Know that your child should be properly dressed according to the season; when it is cold, dress them warmly. when it is hot dress them simply.
Know that as they get older, although the regularity of the pain crisis reduce, there may be other complaints of pain anywhere in the body and this is caused by the constant untimely breakdown of the RBCs. These must be taken as seriously as any pain crisis and checked up at once.
Know that even though they may no longer be so dependent on you, they still need reminders from time to time to take their medications and keep up the regular water drinking habit too.
Know that your kid will grow, learn how to handle physical stress and have added stress to the list such as emotional, financial, educational and the likes. All they need is support, love and care.
Know that despite the heavy and numerous medical burdens that comes along with being SCA patient, they can and still do live a normal life; go to school, have friends, fall in love, have careers, get married and have kids.


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