Early Days

Posted by Juliette
Samuel Reuben was born at 4am on Sunday 14th April 2013 weighing 5lb 14oz or 3.7kg. He is a much loved baby and brother to 4 year old Joseph who is delighted about being a big brother.

He arrived a little bit late (5 days overdue), but the labour was very quick. Much to the surprise of the midwives he was born in 5 minutes! My medical notes state:
1st stage of labour (contractions) - 1 hour 5 minutes
2nd stage of labour (delivery) - 5 minutes
I actually think that 5 minutes was a bit generous as it was 3 pushes. Incredible!

After this he started well, we established good breastfeeding and he regained his birth weight. On about the third day we felt he was very uncomfortable from colic or reflux and gave him colic medicine. In the weeks that followed we became increasingly concerned and tired in equal measures. He would not ever settle to sleep, I'd feed him to sleep, wait 30 minutes to make sure he was sound asleep, warm the mattress so that it didn't differ in temperature to me and then put him in the cot. He would stay asleep for 10 minutes at the most and then wake and be inconsolable unless offered another feed. This meant it was an endless cycle of feeding without sleep for any of us.  The only solution we found was to feed him in our bed and let him sleep on top of me. This allowed us all a little sleep and was fine until a study published in the BMJ (when Sammy was six weeks old) warned about the dangers of co-sleeping and added another level of stress and worry to our lives.

During the day Samuel fed almost constantly. He would scream every time I put him in the car. I visited the GP twice and got medication for reflux. At the same time his weight dropped off the bottom of the centile chart. We couldn't understand how a child who fed almost constantly was not gaining weight. We introduced top up formula feeds and I expressed thinking I needed to increase my milk supply. We weren't coping well but nothing prepared us for the life-changing news we received on Monday 3rd June when Samuel was 7 weeks old.

Shocking News

On Monday 3rd June I was called by the health visitor. She said she had some results from the Guthrie test (heel prick blood test) done by the midwife. This came as a surprise as I wasn't expecting any results. She said a nurse from the Royal London Hospital, a large teaching hospital and certainly not my local general, wanted to come and see me in a few hours to give me the results. She also asked if I had someone with me. This question sparked a fear that we were to be given some very bad news.

I asked Mark to come home from work and my mum was able to take Joseph out and give us some space. Once Mark arrived home we had the worst wait of our entire lives. We were imagining what horror lay in store for us. I didn't look up what the Guthrie test identified as I was scared I would start picturing all the sick children I have worked with during my nursing career with those conditions. Mark on the other hand had Googled the test on the journey home and read up about each of the 5 horrible conditions it could be. Mum imagined every dreadful condition under the sun and prayed it wasn't any of these. Stupidly, I had asked the health visitor for the name of the nurse as I know some of them. The answer she gave matched the name of an oncology (cancer) nurse I know so I was trying to work out medically if this test could possibly identify a cancer. We had a miserable few hours waiting.

The nurse and health visitor finally arrived and I didn't recognise her which offered some relief to me for a moment but it was fleeting relief. Niceties were exchanged by these two strangers with my mum and Joseph, who was excited about going on a hunt for the ice cream van and then Joseph and mum left.

So drinks offered (you've still got to be hospitable to someone even if you wish they never had cause to enter your home) and with Sammy feeding, we were as ready for the news as we were ever going to be. The nurse asked if we knew why she was there. This is the oldest trick in the book: find out what they know to help you start at the right place in giving bad news. The consultants I have worked with used it preceding a diagnosis and it's a question I have myself asked to patients in one way or another. We knew the newborn screening had shown Sammy might have a condition. She explained she was the Cystic Fibrosis nurse and the blood tests had shown that he may have CF. At the time I didn't know what Mark knew but all I could think of was that my child was going to die young and before this spend his life in and out of hospital with terrible chest infections. I was not entirely wrong but thankfully treatments and knowledge have changed so life expectancy is higher then I thought. I found out later Mark was thinking exactly the same.

The nurse then asked about Sammy's eating and weight and she told us it was very likely that he did have Cystic Fibrosis though it could not be confirmed without a sweat test. She gave us some more information, answered all our questions and informed us about the sweat test booked the following day at the hospital. She was very good, she managed to give us devastating news which changed our future as a family forever and yet we felt very supported despite our shock and disbelief. We were not left in a mess at all, I guess we were left with something practical to do - take Sammy in for a sweat test the following day and meet another nurse and a consultant.

The details of that day will be covered in a post on the 'Updates' page.



  1. Your amazing hon i had no idea you had another boy yet alone a diagnosis of cf this is an amazing resource for others in the same boat. Im only a short walk away if u need anything im happy to help or pop in for a natter ..he's beautiful by the way congratulations xx Kate xx

  2. Hi Kate, thanks so much lovely you are very sweet. Perhaps we can go out to the Hainult Country Park sometime over the summer xx