Meet precocious 10-year old professional actress and Sickle Cell Warrior, Miai! An interview with her British actress mom, Lisa Davina Phillip ….
I am Lisa Phillip, 42 and a single mom. My daughter, Miai is 10, home educated since she was 5.
As I carry both Cystic Fibrosis and Sickle Cell trait, I would definitely consider the genotype of a future partner. I found out I carried sickle cell trait at the age of 11 following a routine surgical procedure but I was unconcerned as I wasn’t thinking about motherhood (or boys for that matter!) at that time. Twenty years later, I was broody and madly in love but Miai’s father didn’t think it necessary to get tested because he ’wasn’t sick and didn’t get sick!’
When he later found out he was a carrier, I was already months into my pregnancy and we naively decided a ¼ chance of our baby having full blown sickle cell a risk we were willing to take. I have no regrets, my daughter is a Godsend but it is wise to get tested before starting a family, then you can make an informed decision.
Miai’s Hobbies: Miai has found that reading books, playing board games and watching DVD’s are useful activities for distracting her from pain. She loves anything creative especially drawing and writing. Miai also works as a professional actress appearing in commercials, BBC children’s television and a forthcoming Netflix series. She has skillfully turned her love of performance into a potential career option and she’s only 10!
DIAGNOSIS WITH SCD
Miai was diagnosed as a newborn baby from a standard heel prick test. I was first made aware of this when, weeks later a letter arrived, informing me a sickle cell nurse wanted to visit our home. I called the corresponding number to ask her exactly why. Why was she writing to us? What did she want? I just needed to hear her say it. When she said my daughter was HBSS I was distraught. Consumed by fear, guilt and disbelief, I felt like I was being punished and sobbed inconsolably as I cradled my innocent newborn. The nurse reassured me that everything would be okay but, in that moment, everything felt so bleak.
Miai has had 6 blood transfusions, the last was in November 2019 following an 11 day hospital staycation. In Miai’s case, a blood transfusion is usually the last resort when all other options (fluids, antibiotics, physiotherapy, oxygen and maximum strength painkillers) have been exhausted. The bag of blood is a (straight up) miracle and within the hour visible improvements in Miai’s demeanour were evident. I get my smiling little girl back. She goes from being withdrawn and listless to cheeky and chatty again. We are so grateful to everyone who takes the time to donate, they are real life Superheroes. Donated blood has saved Mia’s life, our lives. Saying thank you just doesn’t seem like enough.
Many people mistakenly believe all blood is the same and therefore it shouldn’t matter who donates it, but Miai’s Blood Type is B and this is more commonly found in people with black and brown skin. And so, it is very important to encourage the Black community to please donate to ensure there is enough blood in supply to meet demand.
Unforgettable Sickle Cell Crises
There was one particular incident at my local hospital when I brought my daughter into A&E for treatment following 3 days of unsuccessfully trying to manage her very painful crisis at home. However, the consultant on call insisted on treating Miai with paracetamol as, according to her, this was protocol, even though I explained I’d already tried a cocktail of round-the-clock analgesics.
After waiting the obligatory half hour for the paracetamol to take affect and witnessing my then six-year-old writhe in agony, the doctor was satisfied Miai needed something much stronger. It was a particularly busy evening in the children’s A&E, and in the time it took for the nurse to sign off on the medication, my daughter was screaming! At that point, I experienced an out-of-body episode. I scooped up my ailing child and marched to the middle of the gangway, yelling, ‘Is anyone going to help my child?’ Within seconds the plan for intravenous morphine was dashed for nasal ingestion. That eased much of the pain before we were admitted onto the ward, where further pain killers were given. I later apologized for my outburst, but I was so frustrated by the entire experience. Miai suffered unnecessarily, it’s sad when doctors overlook the experience and expertise of parents in favour of generic text book solutions.
Miai has been hospitalized approximately 12 times but we manage most of her crises at home. Miai has been experiencing abdominal pain on a daily basis and a recent scan revealed she has gallstones. She is now on the waiting list to have her gall bladder removed. Of course, we are both apprehensive but it’s keyhole surgery and she’s taken comfort from the fact, many other sickle cell warriors have had surgery (multiple surgeries even); so Miai is in good company.
Coping as a Mom
I experienced an almost out-of-body episode. I scooped up my ailing child and marched to the middle of the gangway, yelling, ‘Is anyone going to help my child?Lisa Davina Phillip
Managing a long-term illness like sickle cell, takes its toll emotionally. You need to have a good support network of family and friends who can bolster you up when things get tough, because seeing your child in distress and not being able to do anything about it is soul-destroying. People make jokes about the guilt that goes hand-in-hand with parenthood. But imagine how this guilt is multiplied when you know you’re responsible for your child’s ill health.
Cultivating a positive mental attitude is so important. I’ve learnt that despite how hard I think we may have it, there is always someone else far worse off. So, it’s important to always be grateful and cherish the pain free periods. We have found much encouragement from joining support groups especially those run by the Sickle Cell Society UK. Just being able to talk to families who ‘get it’ is vital, it stops that feeling of isolation. We can share ideas and tips, discuss potential new treatments and common anxieties can be alleviated. I have learned that as a parent, I need to look after myself because if I am not at my best, how can I support my child? My belief in a higher power has helped me to cope with raising Miai. I have faith that there is a master plan and so each morning we arise, we walk with purpose.
At around the age of 7 Miai began to the question ‘Why did God give me sickle cell?’ I explained we all have battles we must face and each battle teaches us a little more about who we are. We began spreading awareness on social media because sharing her journey with other young sickle cell warriors gave Miai purpose. This led to events that allowed Miai to speak publicly about her life with sickle cell. Miai and (her puppet Ama) have been part of various campaigns to encourage more black blood donors to join the register including NHS Blood and Transplant, the Afro Caribbean Leukemia Trust (ACLT) and even featuring in UK rapper and grime artist A Star’s ‘Hidden Pain’ video. Miai’s strength and determination is so inspiring she’s appeared on two BBC children shows, ‘Blue Peter’, where she received a Sports Badge for following her physio regime and ‘Operation Ouch’ where she was runner up for a Big Heart Award for all her charity work.
Like many Sickle cell soldiers, Miai has very small veins, so trying to draw blood or administer a canular can be very stressful. I used to hold her down to keep her arms from flaying but this was traumatizing (for us both). As a small baby she would cry when approached by a doctor or nurse because she associated their presence with yet more pain. A few years ago, Miai went through needle therapy, where she spoke in confidence to a therapist about her needle phobia. She drew pictures and used toys in role play situations to express her anxieties. She was given breathing exercises with feathers and bubbles and assured that it was okay to cry. The therapy has really helped, now taking blood a much calmer experience.
A pro-active way of coping is to know your triggers and then avoid them. Miai likes to lead an active life including ballet, BMXing and swimming but sometimes her body is not willing ‘to play ball’. She is therefore encouraged to rest often and stay hydrated. English weather is unpredictable and sometimes we experience all the seasons in one day! We usually walk with extra layers in case the temperature drops; and we never leave home without painkiller because a crisis can strike without notice.
I have been home educating Miai since the age of 5, mainly as a result of her sickle cell and partly because I am self-employed, so it fits into our lifestyle. I am enjoying playing a lead role in Miai’s learning and creating a bespoke curriculum that nurtures the development of a well-rounded, confident, articulate and capable young lady. Because we focus on subjects Miai is interested in, learning is fun, Miai is excelling in English, History and Maths. Miai hopes to start Secondary School in 2021.
Outlook on life
Sickle cell has very much affected my outlook on life. When Miai was very small I was afraid of everything. If I could have drawn a force field around my child I would have, every time she coughed or sneezed, I panicked. But as Miai has gotten older and gained more independence, I’ve learned to ‘take a chill pill’. It isn’t healthy to wrap her up in cotton wool, I know she has to experience life for herself and I will be there to guide her, should she stumble.
Coping with COVID-19
When the UK went into lockdown (March ’20) and vulnerable people we advised to self-isolate, those old anxieties began to resurface. As ardent home educators, we had a head start on many of the children used to attending mainstream schools and forced to home/crisis school. The government provided food parcels, supermarkets prioritized deliveries to the most vulnerable and Miai’s pharmacy provided a home delivery service, so we didn’t actually have to leave the house! However, I made getting fresh air and sunlight a priority, especially since Miai takes Vitamin D supplements. We are lucky we have a garden and in the summer months we made full use of the outdoor space, playing football, jump rope and hop scotch. Miai built an assault course out of bric-a-brac from the shed, we spread out our picnic blanket and eat outside and we’re soaked from head to toe after water fights. Now winter is upon us, flu season is here and we are in a second lockdown. Sigh! It feels like a never-ending nightmare. I don’t watch the news media anymore as it just feeds my fears. We spend a lot of time at home, baking, growing plants from seeds, reading and even meditating. We have taken full advantage of the many online learning platforms including black history studies, storytelling sessions and virtual support groups. I’ve had to balance taking precautions with not frightening my daughter as we still have to find a way to exist in this ‘New Normal’.
Old head, young shoulders
I love the saying ‘You are never too young to teach and never too old to learn’ and Miai has taught me to live in the moment. She writes her own rules and does not allow the condition to define her. She has taught me not to be afraid. We all have our crosses to bear and battles to face. She faces her condition head on, shows remarkable maturity and compassion for someone so young.
Miai has big dreams of being a successful actor, author, fashion designer, vet and photographer. Her sheer resilience indicates she will achieve all those things and much more. I am definitely #oneproudmama!
Follow Miai’s progress on Instagram @sicklecelladvocate