A midwife patiently tried to get enough blood for my newborn daughter’s heel prick test. Her tiny feet were so cold on that chilly February morning. I naively told the midwife not to bother. Chances of her having anything wrong seemed minuscule and the repeated attempts were hurting her. ‘I insist,’ she replied.
I’d forgotten all about the test. Three weeks later I woke up in the night wondering why I’d not heard back. That same morning at 9am, the phone rang. It was the health visitor with some instructions. You must attend the Children’s Hospital at 2pm this afternoon. She gave me the name of the person we were to see.
I put her name into a search engine. Taking a sharp intake of breath I saw the words ‘Cystic Fibrosis specialist nurse’.
At 2pm, baby in arms, worried and stressed, we were ushered into a room. The Specialist Nurse and a Respiratory Consultant walked in holding a file containing her medical records. At only 3 weeks she already had a folder. This was not good, why would she need such a folder and why did it already seem bulky. As doctors ourselves we knew that we were about to be given bad news. There’s a silence, a polite introduction and the air in the room changes. With calm and concern they delivered the news we were not expecting to hear. I was shaking so hard I nearly dropped my daughter on the floor. ‘Are you sure its not a mistake?’ I asked. This has to be wrong. No-one in our family has the condition. No one in my husband’s family either.
Looking at my innocent, delicate baby breathing and so dependent on us, the life I imagined for her seemed gone. They told us our lives should continue on as normal. She had a right to a full and rich life and that should not change our hopes and dreams for her. That was five years ago. That little baby is now a strong little girl with a powerful attitude to life that humbles me and everyone who knows her.
Cystic Fibrosis (CF) is a genetic condition affecting around 10,000 people in the UK. About one in 25 of us carry the faulty gene leading to the condition without realising it. Two copies of the gene are needed to have it. The NHS heel prick test was introduced in 2007 and picks up the condition early. This early diagnosis can help in tailoring individual care and potentially longer life expectancy. The faulty gene affects salt and water levels in the body. It causes a build up of thick sticky mucous that affects vital organs, predominately lungs and pancreas and has a wide range of symptoms. Prone to lung infections, the lungs can be damaged leading to frequent antibiotics and potentially a lung transplant. Daily physiotherapy, vast amounts of medication, vigilant hygiene and ‘rules’ of things to avoid are a way of life. Digesting food and fat soluble vitamins is hard for some, my daughter like many others with the condition, takes medication with every meal to enable her to digest food. There is a huge psychological toll. No-one person with CF is the same. There are amazing treatments available and ongoing research into the condition. Many UK patients are waiting for NHS access to expensive but life saving and life prolonging precision medicines. CF can dominate daily life. People and their families with the condition know the NHS well.
We see the Cystic Fibrosis team that care for her more than we see our own families. Without the NHS she would not be here. Without the heel prick, we probably wouldn’t have known for months, years even, until she became sicker and sicker. Her team consists of respiratory consultants, specialist nurses, dieticians, physiotherapists and psychologists. Behind the scenes are a vast team of people – radiographers, play specialists, microbiologists, ward clerks and more. Her medications are extensive, closely monitored and reviewed against current evidence. They are costly. The team costs. But thanks to the NHS this does not cost us a penny.
Members of the team will visit her at school to take swabs, advise the teachers on medications, diet, no-go areas and the psychology of the condition. They come to our home to do the same. They will drop off equipment, medications, remove long term intravenous lines all in our home to enable her to live a life as close to normal for her. For her, this is normal. For us, it is normal.
The NHS is a remarkable and cherished intuition. The NHS keeps my daughter alive. I cannot thank this team enough for the care they give. I cannot thank the people at the hospital who look after her when she is hospitalised. The NHS is built on the care and compassion of many. Everyday someone goes the extra mile to care for you or a loved one. There are too many instances to remember. The nurse who gave her his own carton of drink when she refused to drink anything. A domestic who visited our hospital room daily would smile and try to engage her. Despite our daughter not uttering a single word in two weeks of hospital admission, she would visibly relax when familiar faces came into the room. Staff delivered meal trays carefully laid out with ice cream and sausages. When you are in hospital a long while you get to know people.
Thank you to that midwife for insisting. Thank you to the NHS for giving my daughter a life she deserves to live. Thank you to the CF team who gives us hope. We look forward to a future whatever path it takes, we know the NHS will be with her, and us, every step of the way.
NHS – Thank You for Keeping My Daughter Alive. Happy 70th Birthday
Sethina Watson, Mum and NHS Doctor @morefluids
Cystic Fibrosis- for more information and support visit Cystic Fibrosis Trust