LITTLE PEOPLE!!!

Children! I love them. Really, what is there not to love? They generally love me too. The reason for the mutual ‘amor’? Well, I guess the kids can just sense that am not like the other big people. You know, putting a cap on all things fun, and such.

ImageWant to talk about imaginary friends?  Well, my imaginary twin was the best. I could go on and on about her. Let’s! If you want to play, please, let’s! I love playing. Children are very interesting people. They have so much to say, somehow the ‘big people’ think they don’t usually make sense, but they do. You just have to patiently follow their train of thought to realize how profound some of their statements are. Anyways, I had such a great time at the department of paediatrics I am seriously considering a carrier in paediatric haematology. I think I’ll have the most job satisfaction spending my days around children.

Let me just say, y’all need to start paying attention to the children. For one, they are not simply miniature adults. They are people. Actual humans, with the entire spectrum of emotions you and I feel. We can start by showing them a little respect and not considering them as ‘little people’ that are not smart enough to have a say in anything. What is that we say about life beginning at 40? Hell, by this, I ain’t even born yet, I guess that makes me one of the little people then. We the children would like to be heard, if that is not asking too much.

Anyways, while at the department of medicine I really thought there were too many sickle cell patients on the wards. Within the period, we saw sickle cell patients from about 20 to 65 years with conditions from pneumonia to infective endocarditis to HIVAN, etc. I also heard about sickle cell patients on other wards  in the department. Their current admissions may or may not have been directly related to sickle cell, but I was just uncomfortable with how many there were at any given time. I felt like sickle cell was following me everywhere I went.

Oh, but nothing could prepare me for my experience at the department of paediatrics. There were just too many children in crisis on the wards, it was simply traumatic. There were those who came in vaso-occlusive crises, VOC. They would spend a few days on the ward and be out, feeling absolutely well.  Almost always there was the characteristic ‘gi-normous’ well-used folder. Been there, done that! It really is not a pleasant feeling, spending a lot of time on admission and being jabbed constantly to get your pain meds and IV fluids.

At a point, one of the kids, absolutely terrified of needles threw such a tantrum when it came time to receive his pain meds, I really felt sorry for him. The child was screaming, on top of his lungs. He just kept shouting, “I’ll bite you, I’ll bite you, leave me alone.” I guess that was the most violent thing his young mind could think up to harm his ‘assailant’. Suffice it to say, he got his meds anyway and slept like a baby after. If only that was the most violent thing in the world, won’t it be such a peaceful place? Ok, some smart a** will probably produce a biological weapon transmissible through saliva, but still. Just think of the US sending a group of marines to Iraq to bite suspected enemy combatants. Won’t that be something?

Staying on topic. The constant admissions and how much school we miss really takes it toll. One of the kids I clerked presented with severe back pain. Another VOC. The child was in pain, yet would not cry. Brave kid! He kind of reminded me of…me! He was wincing, doing stuff I’ll generally do when I am trying to act all macho. Well, I noticed and checked his folder.  He was two hours behind on one of his pain meds. I prompted the nurse who attended to him immediately and he was pain-free and asleep in no time. That made two happy kids, yes, I was happy too.

So I returned to the ward the next morning and my friend was crying. Had been for quite a while. First thought, these people have delayed his meds again. So I asked, turns out he was fine. Very fine, actually too fine. He wanted to go home. That was the reason for the tears. You see, my new friend ranked 10th out of 34 in his class in the previous term and was two weeks away from exams. Simply he did not have time to be sick and on admission. He wanted to go back to school. Now, that is my kind of kid. You know the whole drink loads of water advice for persons living with sickle cell, I asked if he drinks his water and in the cutest voice ever he replies, “I drink plenty water so that my sickness will go away”. Tell me, this is not the best kid ever. Very determined, again, like myself. I hope he came out tops in class this term. He simply ain’t got time to be sick.

The second most common presentation of the children with sickle cell disease I saw was the jaundice and dark coloured urine combination. This one kid had very remarkable jaundice. I saw those eyes, and just had to find out more. After a few questions I found out he was SS. Thing is, he was 11 years. I don’t think he had any biceps or triceps to speak off. So I decided to measure his mid upper arm circumference, which we generally do not do for children of his age. It was less than 11. That is just to give you an idea of the severity of his malnutrition. Weirdest thing though, he had the most beautiful silky black hair. Malnutrition causes silky hair, (think kwashiorkor) but his was black. Whatever happened to the characteristic browning of hair?  Damn! I’ll pay to have his hair. There was no way this was due to malnutrition, but actually, it was!  By the way he was in class 1. Which is a class for 6 year old children, he is actually 5 years behind in his education. Turns out, he spends most of his time in the hospital instead of school.

Another child who had been on the ward for quite a while, presented with what was thought to be a vaso-occlusive crises. Later, treated for septicaemia, he spent about a month on the ward.  He was sick, he really wasn’t going anywhere. The whole time, his mom was at his bed side daily. Lord only knows the effect this had on her employment. X-ray findings later showed osteomyelitis (bone infection) which by the way is very common in children with sickle cell disease. Oh this kid was absolutely terrified of needles too. I think you would too after about a month of constant jabs. The plan, surgical management of the affected limb, which entails more hospitalization, more absence from school for him and work for mom, more health costs and so much more.

Stroke. Oh yeah, you read right. This child was about 10 years and had already suffered his second stroke. Young person! Stroke! Think sickle cell, you won’t be too far off.  ( Throw in other hypervicosity states into the mix for differentials). Thing with this child, cheerful boy, I must say, he had suffered a complication. Expressive aphasia. Simply, he couldn’t speak. He could hear and understand us but had lost the ability to communicate with us. I really have no idea what the long term plan for management is with this child, maybe some form of speech therapy would come in handy.

These are but a few of the wonderful children I met during my paediatrics rotation. I always made time to play, even once pushing one of the kids on his little car thingy along the corridors. When you have been on admission so often you really appreciate the little gestures.

Image

It was also sad, seeing so many sick children daily. Anywhere but the hospital! Children should be out playing, running around in school, yet, these children spend so much of their childhood in hospitals and my question is why? Simply, why?

Why are children still being born with a preventable disease? Why are children still being subjected to so much pain and illness? Is it lack of information or do we just not care about what the children we bear go through?

I keep harping on this point. It starts with you. Know your Haemoglobin genotype, and then that of your partner. Then you need to get us much information as you possibly can to help you make an informed decision.

What are the odds of you two having a child with sickle cell disease? Is that a risk you are willing to take? Can you afford to prevent it, maybe IVF with genetic selection. Is a bone marrow transplant affordable and accessible to you?

Or maybe you will have that child, because missing several days of work sitting by your sick child on admission will not adversely affect your finances. Maybe you can afford extra tutors so they don’t fall behind in school. You can afford all the medications, test and procedures to keep your child healthy. You can give that child a good life. Well, fine by me. As I always say it is a personal decision.

Ensure that you have considered everything before you make a decision. I am glad to be alive. I have a pretty good life, I can’t say same for others. Really, can you afford this? More importantly, can you live with seeing your child in distress?

In making that informed decision, remember, there are always variables that we cannot control such as a child with sickle cell disease having two strokes before the age of 10. You can afford it, but should you? Just consider this carefully and make an informed life choice.

Love,

Sefakor_Enam.

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4 thoughts on “LITTLE PEOPLE!!!

  1. Rhoda

    my heart just bled reading this piece…2 strokes before age 11?!!!
    oh God, no! l can’t watch my child go through this, I WILL ABSOLUTELY NOT!
    l thank God for brave hearts, like u Sefakor. Keep on educating us to make more informed choices…. l love u!
    (pls pardon my emotional self, at this point l was actually tearing up)

    Reply
    1. juanbankas Post author

      Hi Rhoda, been a while. Thank you.

      It is totally understandable to be emotional about this. More people need to have as much conviction on this as you.

      We really are blessed to be in our current state of heath. .Stay healthy dear

      Reply

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