Kwame

What follows is the very moving and inspirational story of 6 ½ year old Kwame Myers as told by his mum Hyacinth….

In April 2006, I was bleeding and having awful pains.  The majority of the pregnancy was like this but nonetheless I rushed myself to the hospital.  I knew it was time even though it wasn’t meant to be!  On assessing me staff confirmed what I knew and any pregnant woman’s worst nightmare...I was in labour and they couldn’t stop it. kwame8wksweb.jpg

I had a very rocky start and had only just moved from my local hospital due to being unhappy with my care.  I had researched many London hospitals for one not too far but great for neonatal care.  I was plagued by dreams of early delivery and death. Kwame was born at 23 weeks and 3 days in 2006 at University College Hospital in Euston, London.  He is a surviving twin as his younger brother Shaka died when he was 23 days old of complications due to his prematurity.  It’s so bizarre when you see dreams unfolding before you.  Kwame weighed 740g (1lb 10 oz) and was perfect in every way just tiny and also very transparent.  His father and I  split up while I was pregnant and hasn’t been in his life much since. Kwame spent just over six months in hospital.  Four months in neonatal Intensive care, about 3-4 weeks in Special care and another 4-5 weeks in paediatric care.  During this time he had various illnesses and operations.  These included long term ventilation and oxygen use.  He was on oxygen for just over a year and a half.  He had a heart operation (PDA ligation), another hole in the heart that closed before release also, long term jaundice and liver problems, reflux, acute renal failure twice which self-corrected amazingly, septicaemia, NEC, hernia operation, RSV, pneumonia and many blood transfusions. Kwame has an older brother who is now 14 years old but was only about 7 at the time.  Just a little older than Kwame now.  He will be 7 this year.  We live in Hackney and although Kwame is very caring and compassionate and loves pets we don’t have any.  The space is too limited where we live. When thinking of Kwame’s biggest achievement, I have to say staying alive and being very healthy now.  He has an uncanny way of remembering so many facts although he has  been diagnosed with mild global delay.  txtboxweb.jpg

He just has some difficulty in writing and getting what he knows on the paper but it is barely noticeable.  He likes to take the role of carer at school and at home and is always helping people, checking they are okay and empathising if not. Kwame loves playing.  He goes into a very creative world where he is constantly inventing things and making things out of paper, cardboard boxes etc.....anything we adults would deem as junk.  He also loves drawing, painting and helping me make jewellery.  It is a joy as I am also an artist and jewellery maker amongst other things.  Kwame loves many books and watching children’s programmes as well as hospital and Paramedic programmes.  His toy ambulances are his favourite play things and since the age of four he has been talking constantly about his desire to be a Paramedic helping other sick babies and people when he gets older. We talk about the training involved on a daily basis as he questions me and we were lucky enough to have a visit recently.  It was a fantastic dream come true for him and he will not be deterred. Inspiration and encouragement have come from many people on all levels.  The hospital staff inspire Kwame and sometimes we go back for visits to the unit to see them.  I usually end up telling his story or answering questions to those parents there on the day.  Kwame says I am a good mum and is attentive much of the time.  His big brother teaches Kwame, plays with him and is a friend to him although like any siblings there are times when they get on each others nerves.  kwame6webpic.jpg

Friends are very important to Kwame and two of his closest friends were also early babies which I find fascinating as we didn’t know until after they formed their friendship.  In school they are staff who actively encourage Kwame to do his best and don’t have low expectations which is important.

My mother especially and friends were my rock and I couldn’t have got through this alone without them. Kwame is  boisterous, cheeky, caring, compassionate, honest and fun.  The fact that he had a very bad start in life and is well and healthy generally is fantastic.  I was told that he may have been very disabled and may never be able to do some of the basic things due to his extreme prematurity.  He has taken part in many research programmes, has been under five different hospitals seeing different specialists and beaten everything.  He has chronic lung disease but no active problems and a mild delay but his mind is razor sharp.  He has defied doctors’ predictions and statistics.  He is amazing and a real blessing! 

Kwame UPDATE

After a visit to the Museum of the Order of Saint John in Farringdon over the summer holidays,  it was there that they watched a short film where badgers were featured.  Kwame was determined he wanted to join and after contacting them online his mother finally found a place for him at the St Pancras Sett in Camden.  He has now been awarded his first badge (The Hungry Badge) and made his promise all since joining in September.

Proud mum Hyacinth said “He is just as keen as ever to be a kwamebadge.jpgParamedic and is talking about it every day as well as reading a very detailed First Aid manual.  He keeps telling people he’s a First aider but I have to remind him he’s in training.  The Staff at St.Pancras have been great and so welcoming.  I really admire their dedication”.

Kwame who is happy to be training for his much desired career as a Paramedic said “ I will be a first aider and need my first aid kit to take with me when we go out. I want to fly the Air ambulance helicopter too”.