From Our First to Our Last Breath the NHS is There – 70 Years of Care

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.

CF medicine

A selection of treatments & equipment needed for my daughter

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

Scooting to school on July 5th 2018 - NHS 70th Year

Scooting to school on July 5th 2018 – NHS 70th Year. Thank you NHS for making this possible!

Sethina Watson, Mum and NHS Doctor @morefluids

Cystic Fibrosis- for more information and support visit Cystic Fibrosis Trust 


A Quest for a Normal Life

In the UK more than half of the people affected by Cystic Fibrosis (CF) will live past the age of 41. As a parent of a child with CF you have various statistics in your mind at various times, but most of the time you try not to think about it. A few months ago I questioned that statistic as we thought that our Minty wasn’t going to make it through her chest infection aged just three. I can write about it now, but that was a shocking moment. 41 years old seemed like an eternity. As doctors my husband and I knew she was seriously ill. Her respiratory rate hit 70, heart rate 180, temperature was 41, she needed oxygen to maintaining her saturation and had not passed urine in 24 hours. She sustained this for hours and I wondered how her little body could keep going having had a general anaesthetic and bilateral lung collapse. We thought she was going to have a respiratory arrest. Those days were bleak and cystic fibrosis had taken over her life. But she recovered. We recovered.

It’s interesting to see how a three year old perceives her condition. She knew she was ill and knew that hospital was where she needed to go. Her choice of clothing that day is reflected in this poignant picture. She had planned this outfit to arrive in hospital. It was her best party dress. She walked into the ward proudly and then sat on the bed. She looked down and tears filled her eyes. I asked her if she was scared. ‘Yes, mummy’, we paused, snuggled and then she jumped down holding back her tears and played with her dollies.


She choose this dress specifically to go to hospital. She walked onto the ward proud, sat on this bed. When she looked up, there were tears in her eyes and she said she was scared. She then, held them back and started playing. Tough.

This week she completed her first lung function tests, getting 110% of predicted. She’s getting ready to start nursery soon and we’ve written her care plan. I thought I would share our philosophy for living a normal life, with normal activities and hopes and dreams.

‘We believe Minty is a magical little girl! She inspires us daily and is tougher than we imagine. She is independent, funny, caring, sociable, exuberant and extremely adaptable. She does not see herself as ill or suffering. She sees herself as any other little girl, but sometimes she goes into hospital and every day she takes medicines to keep her well. This is her normal life and we make it normal for her. Even when she is really ill and goes into hospital, she goes there to get better and in her last admission she knew she needed to go to get better. CF is a journey that we all learn from all the time but we have developed a philosophy that we hope anyone who looks after her shares. Minty is number four of four children, she has one older brother and two older sisters.

We only use positive language surrounding the condition. She is living with it, she is not suffering, she is not ill. Medicines are not ‘yucky’ or inconvenient. Avoiding certain things are to keep her healthy not ‘stop her from getting sick’. Physiotherapy is to keep her fit and healthy. When she doesn’t want to do it we suggest that she wants to feel great or well. She remembers what it’s like to be unwell and go into hospital, she is able to make the connection and will always pick to do the things that keep her healthy if she needs a bit of encouragement.

When talking to others in her presence about her condition we remain positive in our wording and attitude. This enables her to remain positive in her attitude to treatments, and by her engaging actively that will give her the best chance of a healthy long lifetime.

However, CF is a life shortening condition with a life expectancy in the 40s. With good care, children like Minty are looking forward to much longer life expectancies. It is also important to allow her to feel rubbish, angry and sad. It is important to remember that Minty getting a cold most of the time will be fine, but frequently may result in two weeks of oral antibiotics or sometimes a hospital admission with a general anaesthetic, PICC line insertion and 2 weeks of intravenous antibiotics. She has had 3 admissions so far, we hope to keep them to a minimum by following good CF care. There are many treatments in development, gene therapy, medications and more. As a family we keenly await these for her, we fundraise for CF Trust and keep an eye on research.’

Here is Minty running a toddler race. She may be last but she’s living life to the max.

Follow Magical Minty fundraising efforts on our Facebook page or twitter @magicalminty_cf.


Being a Junior Doctor & Parenting a Child with Cystic Fibrosis

Last week junior doctors staged another strike in opposition to the proposed enforcement of Hunt’s Junior Contract. A contract which most doctors believe will endanger patient lives and destroy the NHS. On the eve on the third strike, while my daughter recovered from anaesthetic I wrote the following piece.

“My husband and I are both junior doctors. Unfortunately, we cannot join the picket line this time.

We aren’t there because we are in hospital with this little one.


Smiling despite low oxygen saturation and high fever.

Our three year old daughter has cystic fibrosis. She’s not been well recently and she’s in for a general anaesthetic, bronchoscopy, fixed intravenous line and two-week course of heavy duty antibiotics. The NHS is so vital for her care and future. We have no doubt that she will be well cared for the next two strike days.
The junior doctor fight is for every patient and every person working in the NHS. Doctors looking after her (and everyone else) should be well rested, motivated and valued. She starts nursery soon, we’d like to see her and our other children at weekends. We already work many weekends away from them. CF shows us that life is precious; it is too short.

Doctors involved in her care over the next two weeks will be many; junior doctors, respiratory consultants, anaesthetists, radiologists and microbiologists. But also ward nurses, recovery nurses, operating department practicioners, specialist nurses, student nurses, ward clerks, pharmacists, pharmacy technicians, porters, health care assistants, domestics, dieticians, psychologists, physiotherapists, radiographers, play specialists and more. Behind the scenes are lab technicians, estates workers, IT staff, medical secretaries, central sterile services team, theatre managers, ward managers, volunteers, security staff and a huge long list of others.

We all work together for our patients. We make something pretty amazing. To think that adding just junior doctors to the ward at the weekend is all that is needed ignores the rest of that amazing team.

When times are tough, we remember this phrase, ‘Dum Spiro Spero’. It means while I breathe I hope. Perhaps one day there will be be a cure for CF. We try to remain hopeful about the junior doctor ‘fight’ too.

Junior doctors are standing up for the future of the NHS. Let’s all stand together. Good luck, we’ve got our badges and banners on the ward ready for tomorrow. She says a big thank you for everyone looking after her.

Mr Hunt, I request that you engage with us and take our concerns seriously.”

Since then, she has been recuperating in hospital and faces further treatments prior to discharge home. The contract in short, may mean many doctors simply cannot afford to work in the NHS, whether financially or emotionally. Minty’s story was featured in The Independent and on Doctors of the NHS.

As always, fundraising for the CF Trust is a goal. Minty’s Godfather and family friend aim to cycle from London to Paris to raise money. Find out more about Magical Minty Cycling Team on Facebook or donate here.

To understand more about the Junior Doctor contract this recent Facebook post is an excellent summary. 


During my pregnancy we went round and round in circles looking for names. My husband and I simply could not agree. We started looking for names that ‘were a bit different’. My husband told me how he once met a girl called Minty. I loved it initially but thought who could actually call their child Minty!! Bonkers. But we looked up the origin of the name and found Araminta. We added that to our list, should it be a girl.

When she was born we spent all day going over and over, could we actually use this name. Will people think we are silly. In the postpartum room I read up on the amazing Araminta Tubman and it was decided there and then. Who was Araminta Tubman? She was born in 1820 and was one of the strongest, toughest women of her era. Born into slavery she escaped and led more than 300 slaves to freedom via an underground railroad. She was a suffragette, a humanitarian and spy. As a child she was beaten by her ‘owners’ suffering a severe head wound which plagued her for life, causing seizures, narcoleptic attacks and severe headaches. Harriet Tubman, widely known and well-respected while she was alive, became an American icon in the years after she died. A survey at the end of the 20th century named her as one of the most famous civilians in American history before the Civil War. She inspired generations of African Americans struggling for equality and civil rights. ‘Minty’ Tubman told others when she died she ‘will go to prepare a place for you’.

Naming our daughter after such an amazing woman seemed apt and an honour. Same day we found out her Ghanaian great grandparents were called Minta. We gave her the name of a strong, independent woman who fought her life through great adversity and hardship. Little did we know that 3 weeks later we would be told our darling Minty had a life-shortening condition of cystic fibrosis.

ImageMinty is now one and what a strong little darling she is. She’s proving to be feisty, energetic, humorous and assertive. Everyday she kicks the ass out of CF. She will be an inspiration to us I am sure. Rancid tasting medications, physio and infection is part of her daily life. We are used to it now. Last year we were in a dark place and now we are totally and utterly dedicated to supporting her and hoping for a cure. Who knows what her future holds? I hope it is a bright one.


So where are we now? Next week she has her yearly check up, including her first bloods and chest x-ray. I am hoping that all is well and the continuous coughs and colds she’s had most of the year have caused no lung damage. (P.S. please add yourself to the organ donation register as someone and their family would love your lungs should tragedy befall).


We’ve amassed a huge array of blowing toys for physiotherapy – many of which come from my lovely brother and his wife (a community paediatric consultant who has to deliver such diagnosis to other families). These are great as they help create positive end expiratory pressure which splints the lungs open nicely. Great gifts for any child with CF. (Avoid bath toy gifts with holes in that collect water and culture hazardous moulds). CF physio can be fun!! Siblings can join in too.

I’ve met and talked to some other amazing parents who’s children have CF. We’ve cried together and shared our stories. We give each other hope and support.

2013 was pretty bad in places, so I wanted to start 2014 with a bang. So I have assembled a team of amazing people who are going to jump 10,000 feet out of a plane with me to raise money for the CF Trust. Scared to death of it. Freefalling at 120mph might put hairs on my chest, or rather blow them off. I am humbled and extremely grateful for the folk who are joining me in this challenge. Why raise money for the trust? CF is a life shortening condition that kills thousands worldwide and is carried unknowingly in the genes of millions. There are around 10,000 people living with CF in the UK, only half will celebrate their 40th birthday. In the UK five babies each week are born with it and two people lose their lives to the condition. We MUST raise money to find a ‘cure’, help people and their families live better lives with the condition.

Please visit our team fundraising page and consider sponsoring us, however little you can give, many will appreciate it.


P.S. Next week I find out if my anaesthetics training application was successful. Nervous.

ALS, Breastpumps and Jam

It’s 7am and the babysitter has arrived. I’ve spent the past week reading up the ALS (Advanced Life Support Manual) in 5 minute breaks; in the garden, in the kitchen or while breastfeeding. I’ve not left my baby for this long, I’ve got a 1 hour drive to the course and the last exam finishes around 6.30pm. I’m worried. Baby needs to nurse else the day will have unknown consequences. But she’s having none of it and 20 minutes late I leave the house with my breasts full of milk. As I’m driving up and get stuck in traffic I’m now 40 minutes late. The last time I did a simulation course was after 9 months of maternity leave and I was terrible. I realise again, that I’ve not been on the ward in 6 months and I have baby brain. Husband has been on nights and I’ve been up 3 times breastfeeding baby. ‘This is sheer lunacy’ I think to myself. ‘Why am I doing this?’

Arriving late and last, the instructor announces ‘there’s a space at the front’. I walk to the front in front of everyone and sweating take my seat. I’m the only FY1 on the course and there are ICU consultants, anaesthetic registrars, other senior doctors and a few FY2s. Intimated. I am doomed to fail.


The morning passes. We do our simulations of cardiac arrest scenarios. It’s about 27 degrees Celsius, hot and sweaty. I’ve let them know ahead of time I’m still breastfeeding and will need to pump at some points during the day. The timetable looks a bit tight. They’ve kindly found me an office and while everyone else pops off to lunch, I go in there and begin pumping. The fact there are 5 people in the office next to me and my pump is noisily whirring and sucking, unsurprisingly I have no let down of milk. Hard staring at pics of my little baby I eventually manage a measly 1oz of milk. ARRRGGHH!! Panic sets in as I know that I have 7 hours to go until I get home.

I return to the course with milk a plenty, sore jumbo boobs which spurt milk with every cycle of CPR. It’s quite distracting. Still, we’ve a nice bunch, supportive instructors and we continue our day. By the time it comes to my exam, I’m thinking it’s a tall order whether or not I will pass. My first scenario exam goes horribly wrong. I do that classic stressful situation thing of saying the opposite of what I mean. I can’t fix it. Midway through my exam I realise what I have done, explain and carry on. I know I’ve failed. My boobs are set to burst with all the stress!

I’m taken to another room where I do another exam. Nothing to lose this time. I think I’ve really extended myself now and will really be quite happy if I fail. Miraculously I pass. Praise be. In celebration, my boobs join in and spurt yet more milk. I now wait for the written paper. It’s 1 hour long. I have no time to express milk. I sit it and wait. Eventually after a long day, it’s announced that I have passed. I am too exhausted to be delighted and manage a relieved, wry smile. I need to get to the car and get home as I’ve not seen my kids in 12 hours.

My breasts direct me to the car and drive me home at top speed. I run in the door. ‘Where is she?’. Poor child reunited with mum is overwhelmed by the abundance of glorious milk. Husband shouts ‘did you pass?’. ‘Yes’, I yell as the joyful softness returns to my painful boobs. Now, I’ve got 2 kgs of strawberries in the fridge lovingly picked by my aunt and if I don’t make jam with them tonight they will go off. So I now begin the prep for jam making. Shattered!

Now, you will have to forgive my honesty. I talk frankly. Breastfeeding mums will empathise with what I am saying. Part of my frankness is to say. WHAT ON EARTH am I doing this for? The past few months have been pretty hellish. I’ve even Googled ‘alternative careers for doctors’ as this life is too much. There aren’t enough hours in the day to fit this in. On maternity leave, I’ve done two teaching courses, started two audits and quality improvement projects (and ALS). Why? Because I need to boost my CV for specialty applications later this year. Oh, and by the way, after three long years I can finally say I’ve been signed off for FY1 and will start FY2. This small piece of news is actually quite major! I’m delighted.

The main reason for the hell I’m afraid has largely been to my husband’s Emergency Medicine job. The hours and the rota are brutal for families. With no disrespect to single parents (my mum was one) I feel like a single parent most of the time. I do ALL the household chores, which with 4 kids is rather extensive and add in all the other ‘man’s jobs’. I’m not one for calling this man’s jobs but there are some I’m afraid. I haul the bins out, fill the car with power steering fluid, mow the lawns and basically seem to do everything in the house. He works long stretches at a time. Average 70-80 hours per week, most of them antisocial and weekends. He seems to have nights virtually every week. My son has no idea where or when he will see daddy. The few days off he gets between these 7-8 day stretches just don’t make up for his absence. By the time we get to a week’s break we are both so exhausted in takes 3 days to feel slightly normal again. When he works antisocial hours, it means I do every evening and the routine, I get up in the morning, there is no rest time. In the early days, I actually had days stretches where I got about 2 hours broken sleep. I would get to bed at 11pm, feed regularly throughout the night and when my son decides to get up at 4.30am, I’d be up for the day (until 10pm). This kind of lifestyle is unsustainable. I will say that my lovely husband does what he can when he is home, and does a lot. But I recognise that the nature of his job means he needs to stand and run around all day. I will ‘allow’ him the lie-in instead of me, when the chance arises. We are used to napping at odd occasions and he will tell me to nap when he can. This means we rarely have time together. Some days we may have only 15 minutes to discuss important things, re-mortgages, catching up with the kids and so on. It’s relentless. This kind of lifestyle impact is why emergency medicine is in ‘crisis’. This week the GMC reported that fact. My husband loves emergency medicine, but the toll on family life is too great. Around 50% of junior emergency medicine trainees leave the job at ST3. I am counting down the days until this job is over. In the past 2 and half years he’s done 16 months of emergency medicine in total, largely coinciding with the first few months of our youngest ones lives. I’m over it already.

Next week I return to work. I’m already encountering problems with the old breasts again. Despite being an NHS hospital there is nowhere that I can express my milk. This was the same situation 2 years ago, but I managed by visiting my son in nursery at lunch. I can’t do that this time and my baby is only 5 months old. With her CF she needs my breast milk for as long as possible and I want to give it to her. Bizarre that the NHS advises mums to breastfeed for as long as possible but have nowhere for their own staff to do so. I’m working on this with ‘health and safety’, but it’s one added stress I can do without before returning back. All I need is a quiet place where I can discreetly go off for about 15 minutes and pump, once or twice a day. I’ll give up my lunch break to do so, so as not to affect the team! Its been suggested that I tell my team members that I’m breastfeeding and ask my consultant if he knows of an office I can use. I will do this, but I find it rather personal info to share. I may as well announce to the team ‘I’m off for a poo now’. It’s my private bodily function and I’d rather not share it with my professional colleagues. Oops, just shared it with you though. Ha ha!

Must finish up now. But this week I also did a fundraiser for Cystic Fibrosis Trust and have raised around £1000! Absolutely delighted. Been moved and humbled by people’s generosity and caring. It was hard work (a cake bake and coffee morning) but so worth it. Again, I thank you all. We’re not quite at £1000, so if you fancy adding a few pennies to the pot I’d be most grateful. In return you can enjoy a slice of virtual cake and feel pleased that you are helping a good cause.

Here is our Just Giving page called the Marvellous M!

P.S. Everything I write represents my own views. I am very aware that colleagues, GMC, employers, husband’s colleagues and so on may read it. My blog is about the fact that doctors are human too. Our personal and professional lives are one! Hopefully our dedication to our profession, patients and our own families comes across.

Baking Cakes, Being Grateful, Community & Fundraising


There are 25 eggs sitting on the side, three packs of butter, two punnets of strawberries and fresh cream in the fridge. Tomorrow I’m looking forward to hosting our wonderful community weekly coffee morning. It’s my last before I return to work next week. Every week the mums and kids in our neighbouring streets get together to chat, eat and support each other. I’ve been very privileged to live in this community, where I can walk down the road and say hello to many people. I can tell you the names of most of our neighbours. There’s one woman in particular who organises this, Hannah H, she deserves a nomination for a honours for community work if you ask me.

Anyhow, tomorrow I’ve asked if they wouldn’t mind me hosting a fundraiser for the CF Trust, as part of the Big Cake Bake.  As you may know my daughter was diagnosed with CF a few months ago, my blog tells our story. A researcher recently sent me this message.

“You and your family should be very positive about your daughter’s future.  She was identified by newborn screening, the multidisciplinary teams that care for individuals with CF do an amazing job and new therapies that tackle the root cause are now being tested in the clinic.”

For our Cake Bake and coffee morning I’ve started collecting virtual donations from family and friends who cannot be there. I’ve been totally blown away by the generosity of people, especially during these austere times. I feel proud to raise money for such a worthwhile cause and proud to have family and friends who support our activities. I am extremely grateful.

If you feel, please visit our Just Giving page and make a donation. Doesn’t matter how small or large, every little helps.

There are so many fundraisers that it’s hard to pick which ones to donate too. It’s likely to be one that touches your heart or one that you feel I hope that never happens to me.

Please bear with me while I mention two other fundraisers.

My cousin has very recently experienced a family tragedy and I was humbled by the generosity seen on his fundraising page for First Touch, exceeding his target by 181%. I’m sure if you read his story you will feel touched by his efforts.  I’ve been reflecting on this giving and expression of support during difficult times. Seeing family pull together for a cause is inspiring. My lovely sister-in-law and 13 year old niece ran Race for Life to raise money for their charity. Wonderful!

At times of need some people step out into the forefront to provide support, often people who you least expect. If you are one of those people, stand proud as you are wonderful! Thank you and enjoy a slice of virtual cake above.

Play & Exercise as Physiotherapy for Kids with Cystic Fibrosis

Jumping for Joy & Health

Jumping for Joy & Health

As a mum of a baby with cystic fibrosis, toys and fun play can form an important part of daily physiotherapy.  Exercise is also integral to encouraging healthy lung function and enjoying life. Blowing and bouncing, what’s not to love?

Our CF nurse suggested starting a collection of blowing toys, which surprisingly aren’t as commonly available as I initially thought. So I’ve started a board on Pinterest with such toys after finding that searching for blowing toys often brings up results including toys of a sexual nature! You will not find such toys on this board.

Other Useful Links

Here is another excellent link on breathing games for children with Cystic Fibrosis and another on trampoline jumping. Physical activity is encourage and many people with CF live extremely active lives, running marathons, playing professional sport and climbing mountains. Some true inspirations. This link shows people in the public eye diagnosed with cystic fibrosis.

Here is a wonderful blog, Run Sick Boy Run,  that states ‘Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life.’

Please feel free to add comments and suggest links that you think may also be useful. This is a work in progress.

We weren’t expecting you, but you are here now. Cystic Fibrosis – The Diagnosis

In medical school, the cystic fibrosis lecture was memorable. The lecturer, I do wish I could remember his name because I want to thank you for the hope he instilled, was passionate. He conveyed his excitement about the new drugs in development for CF, raved about the possibilities of gene therapy and said ‘there will be a cure one day’. It was like a performance, an uplifting speech, much of which went over my head as he talked about delta F 508, CFTR and so on. Interesting, I thought, but that will never apply to me as we don’t have the CF gene in our family. For sure we don’t; I’d have bet £1 million that we didn’t. Especially as I’m half Ghanaian. No way. That’s the thing, you imagine that these things always happen to other people. That’s what my doctor husband thought too when he sat through the same lecture one year earlier.

Our daughter’s life had a brief 3 week period of no known CF. We received cards and gifts, fell in love with her and celebrated her welcome into our life. She will be my last baby and she took quite a journey to get here. We were thrilled to meet her.

Here she is!

Here she is!

It’s always on the power of hindsight you look back and see hints of things to come. The newborn heel prick was memorable as she was reluctant to give her blood. The midwife came another day to try again. I nearly said ‘don’t bother’ as those things won’t apply to her. The test took longer than usual to come back. Odd I thought, I think they are repeating it. Still, I thought nothing of it. Some three weeks later while feeding in the middle of the night I thought, ‘it’s still not back I better just give a call’.

Didn’t need to because at 9am one Tuesday morning a worried sounding health visitor called to say we needed to go to the children’s hospital at 2pm that day. She sounded like she didn’t want me to ask her any questions. Panic ensued and I Googled the name of the person we were to see. Palpitations set in as I saw that she was the CF specialist nurse. My husband tried to reassure me saying it was probably nothing and that the blood tests were going to be repeated.

Now, I often tell patients to use the Internet with caution as there is a lot of misinformation out there. Googling positive CF newborn screening I found such misinformation. Confident that this was a big mistake and that the test would be repeated we went down, I nearly told my husband not to come. As a doctor, I had no idea that the heelprick test could be diagnostic. Merely a screening tool for other tests I believed. There she was a lovely healthy baby with nothing wrong with her.

As we arrived at the hospital I knew something wasn’t right. We were ushered into a room quickly, taken out of the waiting room. I felt this to be a bad news room. When the specialist nurse and consultant walked in carrying and large folder with our baby’s name on I thought, this isn’t good. This isn’t good at all. Why was the consultant there, what did he want?

They began by asking how the pregnancy went and how she was doing. “Fine, OK, she was just breech that’s all,” I said. From then on he explained how the test had shown the 99.5th percentile for the enzyme produced in CF patients. The blood sample had already been sent all over to labs here and there. Long story short, two genes were found. “That means that she has a positive diagnosis of cystic fibrosis,” he said.





I looked down at my baby. It was like I had been told she was dying. That’s what it felt like, looking back on it now. I was shaking so badly I thought I would drop her. My dear 3 week old baby, what life does she has ahead of her I thought. Tears ran down my face as I looked at hers, so innocent and so new. How was this tiny baby going to live her life like this I grieved. “Is there any chance that its a mistake?” I asked. I knew it wasn’t but just had to be sure. I was simply unprepared, not that you could be, for the diagnosis. I would pull myself together for a few minutes then burst into tears again. My two year old tore road the waiting room as if nothing had happened. We asked questions, we absorbed answers, though probably only a fraction of what was said. It seemed completely surreal. This couldn’t possibly be my child. My husband looked pale, in shock and spoke quietly. He felt the need to be strong, matter-of-fact, optimistic to support my postpartum collapse.

I felt that her future had been re-written. I felt that she was facing an unknown world. I wondered if we were up for the job for looking after her. I remembered patients I had cared for on a respiratory ward and I remembered the battles these patients had faced, the antibiotics, their life in hospital, their lines, their life. I remembered the lady I helped prepare the papers for her lung transplant. All of this flashed before me. In a moment, I imagined quitting my job, my child being ill, my family and a trillion other worries all at once. Our family’s future was also re-written. It was too much to take in.

This is where the consultant said, “you must not change any of your hopes and dreams for her or for you all.” “You must live a normal life.” Lots more was said about her going to university, school and travelling the world. I realised by the end of the two hours we spent there that we did need to carry on as normal. She needed us to be strong for her, to be her rocks of support, her advocates and love her unconditionally.

Coming to terms with the diagnosis and quest for information I found it hard as words like, life threatening, fatal, lung transplant and so on stood out. I chose not to read information that told me her life expectancy is 41. I know now that those diagnosed through screening can do very well because we catch it early.  We are now around 3 months into prophylactic antibiotics, Creon, daily physiotherapy and the amazing multi-disciplinary care team support we have for her. This is where I truly understand and appreciate how each individual contributes synergistically to brilliant care. I shall not go into details as every patient has their own care plan and experience of this journey. What I will say is that now, more than ever, I know we must be grateful for the NHS and the service it provides.

Reactions from family and friends were unpredictable. That was very hard. All I can say is call people, communicate even if you don’t know what to say. We experienced a sad sense of abandonment which will stay with us forever. If you don’t know what to say, say just that “I don’t know what to say”. Cards and gifts stopped and her birth stopped being celebrated. Some even said “I bought a present for her but I feel that I shouldn’t send it now”. Please do. It has taught me that no matter what every child’s life must be celebrated and welcomed. Each child has taken a difficult journey to get here. That said, support has been great. It’s brought many family members closer together. Our family unit of six seems stronger than ever. I’m extremely grateful for my rekindled relationship with my youngest brother, who has been outstanding. Thank you to him and to you all.

If you would like to know more about what cystic fibrosis is please look at the CF Trust website. If you have a few spare pennies or pounds (not that many of us do these days) please consider a donation to the charity. In America? Try the Cystic Fibrosis Foundation.

I am hoping that in her lifetime we shall find a cure. I believe her future, though uncertain, looks bright. But there’s much to be done.

My daughter and I

My daughter and I

Coping Mosaic

Getting through the day as a busy mum?! I used the following coping strategies: mugs of yummy tea, moments of beauty in the garden, baked goods including this Malteser Tray Bake and, admiring the beauty of my children and never taking them for granted.

My 14 week old daughter's chubby feet as she is asleep.

My 14 week old daughter’s chubby feet as she is asleep.

Nature's beauty. Flowers in my garden.

Nature’s beauty. Flowers in my garden.

Delicious tray bake, heck I'll even eat for breakfast. Don't tell my kids.

Delicious tray bake, heck I’ll even eat for breakfast. Don’t tell my kids.

Mum's mug of tea. Cannot live without it.

Mum’s mug of tea. Cannot live without it.

From There to Here

Medical school graduation and my girls!

Medical school graduation and my girls!

My previous entries are from 10 years ago. Just a brief re-cap to bring you up-to-date. Moved 5000 miles from California to England. Changed lifestyles, divorced, re-married and graduated medical school 3 years ago (see pic with number three in my tummy). Now a mum of four children and married to another doctor. It has been quite a journey – never focused on the destination just took each day at a time. Sometimes it felt as if I would never graduate medical school, much as it feels that I will never finish foundation year 1 as a doctor. But I did graduate, even managed honours, and am now set to finally finish FY1 this year having taken three years with two babies during it.  The journey still continues and I am enjoying (when I can) the ride. The destination? Who knows! Ride along with me.