How to Care for Your Sickle Cell Warrior Baby

I have often heard that pregnancy is a very special time for most expectant parents. The thrill of experiencing a new life you have a part in making grow within you is something which only those who have experienced it can relate to. Like I said, I have only heard. I have never been pregnant. However, what I have seen about some pregnant ladies I have come across confirms this. There’s always an excited glow around them. That anticipation to have their new bundle of joy in their arms ever present. The excited glee of planning and envisaging a future for their kids… what will they look like? Will they look like mama, papa or will they decide to look after that ancestor in the family the new parents have no idea about? What will they grow up to become?

These questions race through the minds of these expectant parents as they eagerly await the birth of their child.

Finally, that day arrives. The baby makes its grand entrance. The ohhing and ahhing of the immediate family and friends follow; along with bowls of food and special born house planti  :).

Everyone is there to marvel at this new bundle of joy. At last, the parents and baby are left to rest. Everything seems ok until baby’s first check up and then the bomb drops… your baby is SS… it has just been discovered that you will be raising a sickle cell warrior… confusion, fears, tears and worry set in. Life seems to freeze and dreams shattered or so it seems.  A million questions race through the minds of the parents.

I don’t know what those questions could be. I was too small when I was diagnosed at the age of two to understand what turmoil went through my parents, especially at a period when available knowledge and medicine were scanty but, bits of conversations here and there during those moments of intense pains I go through and the worried expressions on my parents’ face, I get to understand it certainly was not an easy news to swallow.

You have dreams for your child and you anticipate a very fulfilling and happy life for him or her. It is only understandable that hearing your child has a condition which would jeopardize those dreams would be devastating. It would be even worse if because of said condition, medications become your child’s loyal companion through life.

I cannot sincerely say how parents react to such news, but from my personal experience, I know it is not news anyone will be glad to hear. That is why, when during my just ended Sickle Cell Awareness Colour Campaign, a young mother contacted me with questions about how to care for her warrior baby, I needed to write this. To come up with a good article, I asked questions to some doctors and also made use of Mr. Google as seen in the link here.

If you have been told your child has Sickle Cell Disorder (SCD), try to relax difficult as it may seem… It is not the end of the world for you and your child. With just a little knowledge and good care, your child could lead a very normal and healthy life as much as possible. What are some things you need to know to ensure this becomes possible? Some of the steps below will shed some lights;

  • Children have an advantage of infancy because during a certain age, say 2-3 years, most children do not experience pain crisis because foetal hemoglobin which protects them is still in their system. As such, there’s pretty very little a parent can do except, take the child for regular checkups and do the following:
  • It is important to avoid things that will trigger your baby’s symptoms. Your child’s doctor and other care givers at the hospital will give you a plan to help you look after your baby.
  • Make your baby to develop a love for water especially, by giving your baby plenty to drink, particularly in hot weather. Dehydration encourages sickle red blood cells to form.
  • Ask around for what vaccines are available and ensure your baby has all the routine immunizations, as well as the flu and hepatitis B vaccines. You will also need to ask about refills so that you get them administered when the vaccine periods expire.
  • Introduce a very healthy lifestyle from an early age.  If your baby has started solids, giving s(he) foods rich in nutrients, such as fruits, vegetables, oily fish, and whole grains.
  • Buy them weather appropriate dresses. This is because dressing them well and keeping them warm protects them against crisis. Being cold can cause the red blood cells to start sickling, leading to a crisis. The sickled cells take the shape of a sickle as seen in the picture here.(pic extracted from the net)
  • Do not be too overprotective around your child.  S(he) will not break like an egg J and besides, an active child is a healthy child.  So, make sure your baby grows up to be active. However, it is best if they do not over-exert themselves. Therefore, involve them in activities which ensure they get as much rest as they get to have fun. Avoid extreme and taxing sports activities.
  • It is equally important to keep your baby relaxed and calm. Getting stressed can lead to a crisis.
  • If you are in the tropics, maintain a clean environment around the house and make sure your baby sleeps under mosquito nets. Sickle Cell warriors have an advantage over malaria because of the low oxygen content of our blood. Nevertheless, we are not completely malaria free and bouts of malaria can provoke crises.
  • Maintain regular hospital checks and give them any drugs prescribed religiously.
  • Monthly doses of penicillin shots are good because they protect the immune system against common infections which may lead to crisis. It is important still, to talk with your child’s doctor if these can be administered and for how long.
  • And finally, stay informed. Get all the education and knowledge you can about sickle cell. These are available online, from your doctors, support groups and seminars and workshops about sickle cell. Staying educated is very important because it will help you ask questions, especially when you are in doubt about a certain form of treatment.

There’s still to be found any acceptable cure though medicine and care has greatly improved and success stories about stem cell transplant are making news. That notwithstanding, your sickle cell baby can still live a very healthy, productive and happy life if you as a parent take care to do the above and stay informed. Some useful link I found on caring for your sickle cell baby is listed below. http://www.aboutkidshealth.ca/En/HealthAZ/ConditionsandDiseases/blooddisorders/Pages/Sickle-Cell-Disease-A-Practical-Guide-for-Parents.aspx; more of such useful links can be found with just a click. Just type how to care for your sickle cell baby on google and bingo!

Hope this inspires warrior parents to take care of their warrior and to help them grow up to see above the seeming dark clouds and aim for the skies confidently.

Keep reading, keep sharing and keep commenting. We are inspired by your visits and comments, thank you.

ARREY-E.AGBOR-NDAKAW

 

 

 

 

 

 

 

 

 

Author: ARREY - ECHI

I am a Sickle Strong Warrior and Advocate. Welcome to my space.

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