Mumfession: My Life as a Mum with Sickle Cell Disease
I’ve wanted to start this column for the longest time, and I’m so glad we have our first feature. Mumfessions is simply a space for mums to talk about their real life as mums, giving us the unfiltered real truth in a way we may not ordinarily hear about or even think of - whether it’s in their careers, relationships, health, travel or general lifestyle.
Basically mums + confessions.
And today, we’re starting off with Elozona, a public health specialist in the UK, wife and mum to two lovely boys who is fascinated with motor bikes and wants to own one! She has Sickle Cell Anaemia (SS) or Sickle Cell Disease (SCD), an inherited blood disease - and shares with us some of her experiences, challenges and advice.
What is Sickle Cell?
In a nutshell, people with sickle cell have irregular, “sickle” shaped red blood cells which stick together and obstruct blood flow in the body. Sickle cells are deformed blood cells which do not carry oxygen as efficiently around the body as they should. This limits the amount of oxygen reaching the body’s organs and can cause extremely painful episodes (sickle crisis), life–threatening infections and possible complications.
Living with sickle cell is challenging and unpredictable, which makes it scary because you could be hale and hearty one minute and the next, you’re in a hospital bed battling the most excruciating pain known to mankind. However, people with this condition live perfectly normal daily lives.
Childhood and Early Years
I remember taking ill and not being at school for about six to eight weeks at age six or seven. That incident made me question why I was so ill and what I needed to do to keep well. My parents were great at explaining these things; my mum was so patient and ensured a very healthy diet. My dad dedicated most of his working life researching and raising awareness about sickle cell anaemia in Nigerian schools, churches and universities.
I think my condition was managed pretty well by my parents in my childhood, besides the episodes of pain which can’t be helped, but managed and treated. My siblings were also great at helping me with things. Growing up, I had to face things by myself, move out, get used to reminding myself of medications, making medical appointments and getting myself to those appointments. Having a plan developed by my doctors and I worked well for me. One of my doctors had me carry an information card around which was so helpful at University.
On Dating and relationships
I do not see SCD as inhibiting at all but I remember having a lot of doubt and insecurities mostly because of the flawed perception of the society I was in at the time. Understandably, the life expectancy of sickle cell sufferers has increased in recent years. If managed properly, individuals lead very normal lives and enjoy fruitful and understanding relationships.
Relationships can be difficult, and when one includes a medical condition it becomes trickier for some people. Nonetheless, it is worth realizing that not everyone can cope with dating or being married to someone with SCD. People have preferences ordinarily, don’t they? It’s no different with relationships accompanying a health condition. I have had people disappear after they realized the extent to which it affects an individual. Still, there are strong and willing individuals who would see past the condition.
Ben, my husband, and I were close friends at Uni. He already knew about my genotype because it was something we discussed as friends. Most students I knew got tested by my dad, so it was easy to know each other’s genotype. When we got together, I didn’t want to take it for granted he knew, so I mentioned it again and again and asked if he was comfortable with it - I needed to be sure. His response was ‘does it matter? We will deal with it together.’ That for me, was a breath of fresh air.
So to others I will say: do not be determined by rejection, but the conviction you matter for the right person, and I promise this breath of fresh air will come with the right person.
My Pregnancy and Labour Experience
My pregnancies were up and down. The first was initially smooth and then bumpy towards the end. I had a consultant-led care at two hospitals as my pregnancies were considered high risk and I wanted a second opinion on everything. My second was rough and I became quite ill towards the end. Neither of my pregnancies were full term because I had to have surgeries to protect the child and prevent any sickle pain which might be complicated with pregnancy.
To other mums in these shoes, I would say look after yourself, stick to your plan with the doctor, check your hemoglobin (Hb) regularly, reduce the risk of infection (I found cranberry juice helped prevent incessant urinary infections), and eat a balanced diet (not sure about eating for two, though!). Above all, reduce stress and rest as much you can, ask questions, seek a second opinion, and ask for help!
How I Manage Myself Day-to-Day
Currently, I manage myself using a home treatment plan developed with my doctors. The onset of crisis usually gives a sign in the form of being extremely fatigued, losing appetite, changes to the colour of urine and eyes. I tend to listen to these, be kind to my body and seek appropriate treatment. Where I live, we have a very great day care centre within the haematology unit at the hospital. So, whenever I notice these signs, I can go in for a day for proper treatment, having tried my home remedy.
My home plan includes a well-balanced, unrefined diet and a lot of fluid intake (I can’t over-emphasise this, drink, drink and drink like a fish!). I also religiously take folic acid to aid replenishing of red blood cells and my prescribed medication to prevent infection. For me, it’s also important to maintain reasonable body temperature in extreme weather, perform regular eye checks, stay up to date on immunization, especially the flu vaccine and take blood when needed (so please donate if you can as you would be helping people like me and many more) among others. Each sickle cell patient is different and will have a different plan to suit their needs. Work on a plan with your doctor!
Get a good support system of family and friends who would be there during those painful crises to give you what you need and ensure you stay healthy. Long-term conditions can impact your mental health and well-being. Taking good care of your emotional and mental well-being is paramount. Physical activity your body can cope with helps. Find a trusted person and talk about your feelings, worries, joys and milestones. For me, I speak to Jesus as I would any friend.
I have crisis requiring hospital admissions about twice a year. That excludes little colds or headaches I can manage at home. My kids are not old enough to understand fully, though my older one understands to some extent as he has experienced an ambulance coming to get mummy to the hospital. So we discussed with him what it meant. Ben is pretty good at holding the forte when I am unable to. I also have help around the house, like a cleaner for instance and my job is flexible and supportive.
Thoughts on two individuals with sickle cell trait people getting married and having kids?
I don’t think I can say whether individuals get married or not. I can say this though: while individuals with sickle cell trait (AS or AC) just carry the trait, they have a 25 percent chance of transferring the sickle gene/trait to their offspring. The real question couples need to answer is, are they open to the gift of conception as well as ready to face any potential challenges?
It is a beautiful and scary thing to love as well as show and receive love, but the heartache of seeing a child or loved one go through indescribable pain, complications and even death can be off-putting! Sickle cell can make life difficult, particularly for the child in question. I don’t think anyone would intentionally want to put another through that.
Get a good genetic advisor to guide you, and consider the moral and ethical issues involved. As someone who has experienced living with sickle cell, it’s something I would not wish to transfer to another as I think the risk is avoidable. If by chance you weren’t aware of each other’s genotype before marriage, like my parents, I trust you would find the strength and grace to carry on.
There may be so-called “scientific” ways of getting around sickle cell kids but I believe children are a gift right from conception and are special no matter what. ‘Getting around kids’ to me is not the best way. It’s best to get tested way before the relationships starts. Know your genotype. Be reasonable in making decisions when one is settling down (which involves being considerate for those yet unborn) and talk to Jesus or whatever you believe in about it. You will find the answer you need.
How I’m parenting differently from my own mum!
If you’re Nigerian, you know our parenting is different. I am grateful for the parenting my siblings and I had growing up and I maintain some Nigerian parenting principles – diligence at home chores, instilling a sense of responsibility etc. However, I like to think I’ve adopted some liberal ways of parenting - using more dialogue, questioning and probing.
If I had 48 hours uninterrupted weekend…
I love nature and I believe the serenity it brings supports creativity. I would certainly be in such an environment if I had the luxury of 48 hours to myself. I probably would also have a spa weekend, indulge in adventurous cuisines (I love food), and ensure I complete the reading and sewing projects I’ve been procrastinating. It would be a luxury to have and I sure would use it effectively! So bring it on, it would not be time wasted!
I found this very insightful and sincere. And a million thanks to Elozona for sharing. If you asked me one thing I took away, it would be the need to try to donate blood frequently. It’s something I’ve only done about once or twice but it would be great to do that more knowing how useful it can be for others.
Any thoughts on this feature? Do you have any experience of this or someone close to you?
What one thing are you taking away?