Sickle Cell Awareness | Betty’s Story

The photos used are of models

Aaaaand we’re back! So why exactly did I take an unannounced break? Let’s just say, the lack of motivation was doing me wicked. But less of that, and more of the matter at hand.

September is an important month for many people in the UK – approximately 14,000 of them and their families. This figure represents the number of people with sickle cell disease. This year, for Sickle Cell Awareness Month, we have gathered the experiences of women affected by the disease in one way or another.

In the first installment of this new series we visit Betty, who is not only a friend of mine but an awesome mother to her two children Nana Kwame, and Jessica.

In fact, credit goes to Betty whose idea it was to have this series on the blog.

In Conversation with Betty

Betty, firstly thank you for being the brain behind this, and for agreeing to take an active part. Can you tell us a bit about yourself?
My name is Betty Quayson. I am a mother of two children. I work as an early years practitioner in a school and I’m based in the ‘two year old’ room. My family and I live in East London.  I have a three year old daughter with sickle cell disorder. My eight year old son, my partner and myself have the sickle cell trait. We are an outgoing, bubbly and active family who has a positive and grateful attitude towards life. However,  having a child with sickle cell disorder can put a strain on the family relationship. As a family, we choose to manage the condition to the best of our ability and live and enjoy our lives.

For those who are unaware, what is sickle cell?

According to the Sickle Cell Society website, it’s ‘a disorder of the haemoglobin in the red blood cells. Haemoglobin is the substance in red blood cells that is responsible for the colour of the cell and for carrying oxygen around the body’.

People with sickle cell disorder are born with the condition, it is not contagious. It can only be inherited from both parents each having passed on the gene for sickle cell.

When and how did you find out that Jessica has sickle cell?

December 2015 – just a couple of weeks after her birth. I went out with my partner to do some Christmas shopping. I got a phone call from a nurse asking to see us as soon as we got home. We had to pick up my son from school so we headed off home after an hour or so. I kept wondering what it was that she wanted to speak to us about. I knew it wasn’t going to be something good, however I wanted to remain positive and not stressed. I also had an aunt coming over to the flat that same day who wanted to meet Jessica. I considered rescheduling with my aunt but in the end, I’m glad I didn’t. She was there to console me after hearing Jessica had sickle cell. My aunt prayed for Jessica and our family.

 

What was your initial response upon finding out?

I cried inconsolably. The nurse explained what sickle cell is and what we should be doing moving forward. She told us what signs to look out for and what to do. I was in shock and just so afraid. All you want as a mother is your child to be healthy and happy, so to hear that your child’s health will have moments, where medical attention and treatment will be needed more often, was saddening but also a relief. A relief because we have the NHS where the care of my child will be easily monitored and managed; our hospital has experienced doctors and nurses and medical equipment available. I was saddened because I’d have to support my child in getting regular blood tests. I’d have to see cannulas being injected into her body. I’d have to watch my daughter cry and still be strong enough to hold her whilst nurses and doctors inject her with needles to administer antibiotics and fluids, and even perform blood transfusions and blood exchanges. As her mother I go through waves of emotions that I can’t even express, as the only emotion that I can deal with is that of my child suffering in pain. I do what is necessary to support and manage her pain with the help of the doctors and nurses.

How does the condition affect Jessica?

Sickle cell disorder affects Jessica in many ways. Her being three years old (four in November), she becomes like a baby when she’s in crisis. Her independence is gone. I have to do everything for her. Her mood changes. We’ve spent weeks in hospital and have had to be in intensive care to manage a crisis. I live in the moment and when that moment has passed, especially if it was a difficult moment to go through I tend to put it in the past and not revisit it, as it’s my means of coping.

 

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Jessica misses days and weeks off nursery. She isn’t allowed to play with water outside or be out in the cold for long periods of time. A common cold or virus can send her into a crisis and back to the hospital. She can easily catch a cold or a virus as her immune system is very weak. When in a crisis, depending on where the crisis occurs, she can not move that body part. Additionally, constant pressure such as heat or massaging needs to be applied to that area. There’s around the clock managing her pain with medication. Jessica takes paracetamol and ibuprofen at home and when the pain cannot be managed at home she has morphine at the hospital.

What is a crisis?

According to the Sickle Cell Society website, ‘the main symptoms of sickle cell disorder are anaemia and episodes of severe pain. The pain occurs when the cells change shape after oxygen has been released. The red blood cells then stick together, causing blockages in the small blood vessels. These painful episodes are referred to as Sickle Cell crisis. They are treated with strong painkillers such as morphine to control the pain.

People with sickle cell are at risk of complications: stroke, acute chest syndrome, blindness, bone damage and priapism (a persistent, painful erection of the penis).

Over time people with sickle cell can experience damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder. Treatment of sickle cell mostly focuses on preventing and treating complications.’

 

Do you know your triggers?
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.#SickleCellAwareness #SickleCellAwarenessMonth #SickleCell #BountifulAwareness pic.twitter.com/8Vc4RnMOVL

— Bountiful SCF (@BountifulScf) September 20, 2019

How has sickle cell affected you as a mother, and how does it affect family life?

As a mother sickle cell has changed the way I move. I don’t go out with my daughter if it’s raining or very cold unless it’s for school. The school is not far away from our flat and they are aware of her condition and know what to do. I have to space my going such as visiting family, church and other places as she may pick up infections. I have to carry her pain medication with me if I am going somewhere far. I still use a buggy if we’ll be out a long time. I always have a jacket on me in case the weather changes.

The impact on the family is mostly when she is hospitalised and we are in and out of the hospital. I have to get my dad, brothers and neighbours to help us out as we juggle work, pickups for Nana Kwame from school, and staying at the hospital with Jessica. Additionally, sometimes Nana Kwame would want to go out and do something and I will have to say no as I wouldn’t want Jessica to get sick.

Do you think Jessica and Nana Kwame understand the full extent of sickle cell?

I used a book from my local library to talk about sickle cell with the kids. By that time we’d already had moments of Jessica being in hospital so she could relate to the character. The book is called ‘My friend Jen’ by Jenicah Leah. I also used resources published by the Sickle Cell Society aimed at siblings. My son also attends some of Jessica’s hospital appointments and can hear and ask questions when he’s there. The main thing that they are most aware of is the cold weather,  the rain and drinking lots of fluids. Jessica has to take medication daily so she is aware that these medications help her to stay out of the hospital and out of pain. In the summer Jessica wants to run through the water sprinkler like the other children but she doesn’t as she knows that it can cause a crisis.

 

Just like vehicles need fuel, our bodies need water. Especially when you are a sickle cell worrior😊💪 #SickleCellAwarenessMonth

— promise (@promise65465111) September 19, 2019

What are some of the things you have done to empower Jessica?

I do daily affirmations with my daughter. I tell her how brave, strong, beautiful and smart she is. I have honest conversations about her condition to her. I attended workshops for sickle cell to gather more information so I can pass them on to her. I attend parents’ coffee mornings and meet other parents and nurses to discuss the complications that can happen with having sickle cell.  Most importantly I just let Jessica be a child; I take her to parks and museums, and we visit family and friends. I ensure and try to maintain an atmosphere of positivity and we thrive through that.

How much have you had to learn, and what kind of things do you do to educate yourself?

I’ve had to learn a lot, and the more I learn the more I see that it’s not enough. Every person is different and thus every sickle cell warrior/thriver is different. However, I have to learn from others to find out what works best for my daughter. It is a never-ending process of learning. The other most important part of having sickle cell is its unpredictable nature when a crisis occurs. I could do everything I’m supposed to do: medication, multivitamins, appropriate clothing and still, she can get a crisis, and I’d be there blaming myself for not doing enough, so I’m grateful for more resources in terms of blogs, books, and YouTube channels that are sharing information and their experiences. It gives me the comfort I need to know, that we are not alone in the struggle of managing sickle cell.

 

What do you find most challenging about raising a child with sickle cell? 

The unpredictability of the condition; the severity of a complication that can occur when medical attention is not seen to; the sudden deterioration of a bubbly young three year old to lifeless child. I look at my daughter when she’s in a crisis and can see that she is worn out. She is beyond tired but she’ll still give me a smile or make a comment that will make me smile.

The need to find a vein is also so challenging as their veins wear down from being pricked and prodded. Then coming back to life or the realisation that life is still going on when your sole focus is the health of your child can be isolating. Having to get back into school, work and home after being in hospital for weeks can be challenging.

 

What do you to relax and take care of yourself?

I’ve been on a journey to better myself since having Jessica. I can see that when I take pride in myself it shows up well in my children’s lives. I enjoy spending time with my friends. I have a great group of wonderful ladies who I’ve known since school, college and university. I am grateful that they allow me the space to vent, cry and to be me. I love to dance and be loud. They are understanding when I am unable to attend a gathering or if I’m late. We also socialise together with the children.

I enjoy watching YouTube and Netflix and being on social media. I have discovered the power of focusing on my breathing. That really relaxes me. I attend a Zumba class that is run in my workplace to help better my physical and mental health.

What would you like everyone to know about sickle cell?

I attend a sickle cell forum the other week and a young man said sickle cell is one of the most common inherited disorders. Anyone can have sickle cell. We need to debunk the stigma that sickle cell disorder is a black disease. Just like no one person is the same. No one sickle cell thriver is the same. It is an invisible disease as it is to do with our blood. It is a chronic disease. It is unpredictable.

Many, many thanks to Betty for this honest and open interview. Please stay tuned for the next installment where we delve into one of Jessica’s favourite books, ‘My Friend Jen‘. Please do us a favour and share this blog post on socials, with the hashtag, #sicklecellawarenessmonth.

 

Thank you!

Sources

https://www.sicklecellsociety.org/about-sickle-cell/

https://www.nice.org.uk/guidance/qs58/chapter/introduction

https://www.ncbi.nlm.nih.gov/pubmed/29294057

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