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Guest post: "My baby has cystic fibrosis, and it's my job to help him feel normal"

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MumsnetGuestPosts · 10/06/2015 16:11

The birth of my first son, Jack, was two days of pain, anxiety and joy. And then, for six months he fed a lot and slept very little. Those days with my newborn were dull and delightful, exhausting and fulfilling; the kind of days where it all feels new and yet you are aware that a million women have been there before you.

So when I became pregnant with my second child I had a sense of what "normal" felt like. It was a quicker birth than with Jack, and then he was in my arms – another boy, Griffin, as hungry as his brother had been. We took him home and for three, warm September weeks things were normal.

Then I got a call. A midwife wanted more blood to repeat Griffin's standard heel-prick test. The original test had been such a formality that I realised I didn't know what it had even been for. Cystic fibrosis, said the voice on the other end of the phone. Griffin's IRT result was inconclusive. We need to do another test as soon as possible.

I googled. The page results for "cystic fibrosis" scrolled and scrolled. Most common genetic illness in the UK. Life-shortening. Mucus clogging the digestive system and lungs. Inhaled antibiotics. Life expectancy of—

During the wait for results my husband and I tried to live life as normal. But it didn't work. We took our toddler to the swings and carried Griffin close in a sling. We drank tea and had hushed conversations that swung from "look at him, there's nothing wrong with him" to "promise me you'll stop looking at the internet?"

Ten long days later a diagnosis of cystic fibrosis was gently confirmed by the specialists at the Royal London Hospital. It turns out that for Griffin "normal" had been a lie all along; from the moment he was conceived he had lived with two faulty copies of the CFTR gene, given to him by his parents, and that he had a life expectancy of… I felt sick every time I heard the number, read the number.

We left the hospital carrying pots of pancreatic enzymes so that Griffin would be able to digest fat properly. These enzymes would now be a part of his life, every day, along with physio to clear his lungs and prophylactic antibiotics. They would be his normal. In turn, our own normal was shattered.

We'd moved into a new house just before Griffin was born, hoping to renovate it gradually. But for the parents of a newly-diagnosed CF baby it was suddenly like living in a nightmare. Damp and mould in the basement posed a threat to his lungs. After studiously cleaning everything with anti-bacterial spray one night, my husband found bio-filmed mould in the washing machine. He said it was like hiding all the knives from the children only to find you'd left a loaded revolver on the kitchen table.

Normal in everyone else's lives became something I found very hard. I fell silent during conversations about second children; about how easy it is the second time round, how the cold you thought was pneumonia in your first is nothing but a sniffle with the second.

A few months after diagnosis, I saw a mum contentedly feeding her baby in the park and I cried so much I found it hard to stop. That baby didn't need enzyme granules tipped over apple purée before he could breastfeed. I cried for Griffin, I cried for my family and I cried because once upon a time I had been that mum.

Now I was a different mum. Now I had a hard number to live with; Griffin’s life expectancy. 37. The age I was when I gave birth to him. A half-life. Not remotely normal. I thought I would grieve forever.

But then as Griffin turned nine months old, something happened that helped me turn a corner. We had been called to a regular development review at our local GP surgery. My husband thought we shouldn't bother, reasoning that our child was already expertly assessed by paediatric doctors on a monthly basis. But I wanted Griffin to do a normal baby thing, so I took him anyway.

Usually when a CF patient visits the surgery they are taken into a room of their own to avoid the risk of contracting infection, but this clinic was packed with babies. I can't put him in this room, I said. It's a development review, they replied: the point is to see how your son interacts with other babies. I looked around. None of them looked snotty. Griffin was straining in my arms. He had recently learnt to crawl.

I put him down and he moved like lightning, shuffling between all the babies, touching each one gently. He placed his outstretched palms on other mothers' knees and smiled at people until they smiled back. He's normal, they said.

And in that moment I realised that, beyond giving medications and managing my own anxieties, it was my job to help my son continue to feel normal; to help him remain open and happy as he explored the universe.

Hannah and her husband co wrote a for the cystic fibrosis trust based on their experience of newborn diagnosis. As part of CF week, the trust have just launched a pack for parents of newly diagnosed babies, you can find it here.

OP posts:
Tiredstressed · 10/06/2015 16:55

I hope Griffin is doing well. My DD was diagnosed with CF at 2 weeks. I identified with your post - it is a balancing act. An exhausting one at times!

quirkychick · 10/06/2015 17:00

The end made me smile! He looks gorgeous btw. My dd2 was born with Down Syndrome, so a lot of what you say about stories of second babies being easier rings true. I remember not having that absolute joy in my new baby that I had with dd1.

Titsalinabumsquash · 10/06/2015 17:10

My DS1 had cf, he's 10 now and we try to make his life as 'normal' as possible, it's a tough road but getting better as developments in medication advance and new research is carried out.

I hope griffin's journey is a fun and stress free one. SmileThanks

albertcampionscat · 10/06/2015 19:55

Thank you for the post. I do remember being struck in 2010 by how beautiful, strong and happy James Fraser Brown looks - it shattered my (ignorant) ideas about CF.

weebarra · 10/06/2015 20:18

What a great post for all us mothers who have had their "normal" destroyed by a medical diagnosis. My second boy also has a condition which comes with reduced life expectancy. He's now five, he starts school in August, and he's wonderful! I hope Griffin is doing well too.

Honeymoonmummy · 10/06/2015 21:09

This is one of the most eloquent and moving OPs I've ever read on MN. I had no idea what cystic fibrosis was. Hugs to you and your family x

todayiamfat · 10/06/2015 21:28

Hannah, what a moving post. You've bought all the feelings back. The anxiety was unbearable.

My dd is 2.5 and still hasn't got the all clear from a sweat test. So I still don't know her diagnosis.

Thank you for sharing. Your family pic is beautiful. Love to you all Flowers

mintyneb · 10/06/2015 22:53

I remember well the days of creon granules and apple puree especially in the middle of the night having to go down to the kitchen to measure them out before going back to bed to breastfeed. and yes I cried over seeing other mums feeding their toddlers without a second thought.

my dd is 8 now and after a rocky start - major bowel surgery at 3 days old due to blockage (a complication of cf) and 2 months in hospital she is doing well.

cf is a cruel condition and so tough on all the family but there are bunch of amazing people working hard to improve treatments and I hope things will keep getting better.

But until they do we as parents try to help our children live their lives to the full

pieceofpurplesky · 10/06/2015 23:44

OP you post is amazing thank you for sharing.

An inspiring read for CF sufferers and their families is 'how I cheated death' by Tim Wotton which has just won the Peoples' Book Award. Tim is a hero, a CF sufferer and wrote the book at 40 (a couple of years ago). I grew up with a best friend who was a CF sufferer and found the book amazing.

giraffesCantPluckTheirEyebrows · 11/06/2015 05:22

brilliant post

Back2Two · 11/06/2015 07:32

Thanks for sharing with us.

Bothamsall1991 · 11/06/2015 08:55

I can relate to this story very well. I have 2 sons who have Cystic Fibrosis. One aged 20 the other aged 12. My eldest son was diagnosed aged 4 years old and his brother aged 4 days old. I was 37 when I had my youngest son. Trying to get Creon and antibiotics in a baby was hard work. Things are easier now and advancements in treatment make it a whole lot easier (if there is such a word you can associate with Cystic Fibrosis) than it was 16 years ago.
Our children look "normal" to people who don't know them and that's a good thing to me - they can get on with their lives without people feeling sorry for them. Both my boys are ver intelligent - eldest is now at University and youngest got all 1's and 2's in his School Report this year despite being in Hospital 3 times in 6 months.
The future for children born with Cystic Fibrosis now is looking more and more positive as new treatments and drugs are showing they will help reduce damage in lungs. In the meantime, we do our best to keep our children well so they can benefit from these drugs.
Special children are sent to special parents to look after them. X

Guest post: "My baby has cystic fibrosis, and it's my job to help him feel normal"
DrJacoby · 11/06/2015 15:27

Beautiful post. Thank you, OP.

apismalifica · 11/06/2015 15:31

My youngest has just finished GCSEs - some at home in our kitchen and some from a hospital bed, he missed 2 exams coughing blood with a high temperature. That is what CF does. He looks normal on the outside, he clever and funny and has a great zest for life, he's our resident IT help-desk and keeps us all on our toes. Unfortunately this year isn't going so well, he has spent almost as much time in hospital rigged up to an IV line than at home. He wasn't diagnosed as a baby as there was no routine test for CF at birth back then. In some ways we were lucky as we had a good start emotionally and he was just like other babies. In other ways it was not so good as by 3 months old he was constantly ill, failed to grow and had already sustained quite a lot of permanent lung damage before he was diagnosed aged 3. One in every 20-25 people in the UK carries the CF gene. If you both carry a copy your baby has a 1 in 4 chance of having CF. You may not know you carry this gene, we didn't know. We hope the new treatments will benefit children with CF, but first we have to get them funded and available.

KEB33 · 11/06/2015 18:25

Wow - I've now read this 4 times and can't believe how every word is how I've been living and thinking the past 8 months since my second daughter was born. Again a huge shock for us, I was so chilled out when she was born and felt so, so content and when that phone call came on Oct 14 last year when she was 3 wks old our whole world crashed and I didn't know how I'd ever feel happy again. It's been such a hard 8.5 months, the first 3 wks what felt like force feeding her milk by midwives to make her grow, then the news came why she wasn't growing, since then it's been cold after cold (a prob with a winter baby and older sibling at nursery) hoping it didnt go to her chest, one hospital admittance and loads of love and support from our CF team, family and friends. When im feeling low I just have to look at both of my gorgeous girls and how happy they both are and how much we love them both and will give both of them everything we can to live fulfilled lives xx

MerryInthechelseahotel · 12/06/2015 09:13

Lovely post op and everyone else. Another one here with a 2.5 year old with cf. so encouraging to hear Bothamshall and see her beautiful boys.

HomeHelpMeGawd · 12/06/2015 10:45

I am posting this wonderful article by Atul Gawande here, in case it's of use to anyone faced with CF.

twojumpingbeans · 12/06/2015 17:35

My daughter has CF too, we are going through a stinker of a time at the moment, what a brilliant post.

JessePinkmansHoody · 12/06/2015 21:47

Fantastic post. My "cf baby" is 23.. Strong, handsome, works full time and planning to propose to his beautiful girlfriend later this year. More so than that, he has wisdom and maturity beyond his years, is clever, kind and fabulous and far from the sickly little child I thought I'd brought into the world only to lose. He works hard staying well (sometimes not as hard as I'd have him work if I was still "in charge" however Wink)

I wish you love and luck Smile

Tellmewhattodooooo · 13/06/2015 22:52

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