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Friends newborn has just been diagnosed with Cystic fibrosis - is there anything practical that she needs to ask/know/do to begin with?

7 replies

linspins · 07/11/2013 20:40

My lovely friend's baby boy has just been diagnosed via the heelprick test and long day at Kings that he has cystic fibrosis. Naturally she and her family are in shock, and upset, and don't even know where to begin.
I have read other threads all recommending the Cystic fibrosis Trust as a good starting point, and I've looked on their website and let her know that there is a 'newly diagnosed' pack they will send you. (Why isn't this given to parents upon giving the news?!!)
Is there anything practical to do, ask, find out that would help out in the first days/weeks, that i could pass on to her? I have made sure I tell her how lovely he is, and how he is still her gorgeous wee baby. I feel so helpless, goodness knows how she and her husband are feeling.

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linspins · 08/11/2013 07:28

Anyone? Any thoughts appreciated.

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Miremont · 08/11/2013 11:17

I have 2 DS's with CF, 1 diagnosed at 6 weeks old and the other ante-natally. In the early days my main priorities were just getting through each day and getting all their treatment done. We were given the CF Trust pack at the time of diagnosis.

I would say at the moment the most important things would be for your friend (and any other family members who will be involved in the care of the baby) to be properly trained to do the physiotherapy which the baby will need to clear his chest twice a day.

Also he will need lots of medication - probably antibiotics and vitamins. He is also likely to need an enzyme replacement called Creon. Most people with CF are unable to secrete the necessary enzymes to digest their food properly. Mine also needed steroids and ant-acids as babies.

It is also important that she knows the CF team at whichever hospital will be responsible for him - in some areas this can be shared between a smaller local hospital and a big regional hospital. Generally speaking the greater the number of CF patients a hospital has the better the care is.

This team should include a Consultant, Specialist Nurse, Specialist Physiotherapist and Dietitian. Sometimes there is also a Psychologist working with the team

The next thing I would want to know about is infection control. It is impossible to prevent all infections. However, people with CF should never mix with each other as they can pass any nasty infections to each other. It is also sensible to avoid people with obvious coughs and colds particularly while he is a baby and hasn't built up much immunity.

Your friend will also need to be aware of any changes which may indicate her DS has an infection which will require different antibiotics. This would include things such as a cough, loss of appetite and lethargy. In this case she would need to speak to the CF team and they will usually do a cough swab to check what the infection is and advise on the correct antibiotic.

Your friend will probably need lots of emotional support, when my DS1 was diagnosed I was utterly devastated and couldn't see how I would ever be happy again. I didn't want to see any one else who had a baby as it all seemed so unfair. If she has any other children it will be hard on them as well - my DD gets very jealous of all the attention the boys get.

Having a DC with CF does change your life and the burden of care can be huge sometimes. It is all very daunting in the early days but this has become our normal now. We have tried to give our DS's and DD as normal a life as possible. DS1 is 7 and DS2 nearly 6 and (touch wood) neither of them have been admitted to hospital since they were diagnosed.

The CF Trust also operate a helpline and Chat Forum which your friend may find useful. We have a big notebook where we jot down any questions we think of so we can ask our CF team.

Sorry this is a bit long but I hope it is helpful.

linspins · 08/11/2013 11:48

Thank you so much Miremont. I am heartened to hear that neither of your children have ever been admitted since they were diagnosed, pleased for you and them.
I know nothing about CF except from what I have hurriedly read recently - are there differing degrees of severity? Would she know if her almost 3 yr old DD had it too?
I hope she will access the chat forum, as from my experience with Mumsnet and other supportive forums I know that often the people who can help you best are those who have 'been there' themselves.

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Miremont · 08/11/2013 12:51

My understanding is that there are different degrees of severity. There are around 1,000 different genetic mutations which can cause CF and I think different mutations can affect the symptoms. However, having said that there can be variations even between siblings. I think as care has got better over the years the outcomes for all children are improving all the time.

I would expect that the 3 year old would have been tested in her heel prick test at birth. My DD was tested when DS1 was diagnosed as this was not routinely offered in the heel prick test at the time. Testing is through a 'sweat test' (people with CF have higher concentrations of salt in their sweat) which is non-invasive and not painful for a child at all.

Anyone with undiagnosed CF would usually display some or all of the following symptoms - repeated coughs and chest infections, slow weight gain and diarrhoea. However, there have been some cases where people have not been diagnosed until adulthood as their symptoms are so mild.

I have always found it very useful to talk to other parents of children with CF. The CF Trust also have regional groups which arrange meetings where there are usually guest speakers with expertise in different CF related areas and these are also a good opportunity to meet other parents.

mintyneb · 09/11/2013 18:06

Miremont has given some great advice and I would echo what she has said.

I have a DD who is now 6.5 and she was diagnosed at birth due to a bowel blockage (a complication of CF) and unfortunately had two lots of major surgery before she was 6 weeks old and didn't come home from hospital til she was nearly 2 months old.

She has had to have 2 admissions since then - once due to a bowel blockage (using strong laxatives this time not surgery) and then once for a 2 week course of antibiotics following a winter of bad colds and coughs.

Having said that, she is amazingly healthy on a day to day basis and has a lung function of 120% of a 'normal' child of the same age. She's the kind of girl that will run instead of walking and sings at the top of her voice whenever she's playing at home :-)

All I would say is that take your friends lead for now. Her head will be all over the place and will feel her dreams for her baby have been crushed. Read up on the condition but unless she looks for reassurance try and not tell her how things are so much better things are for children with CF. I have come to take great comfort in that now, but at the start I was so angry and didn't want to hear people telling me things were bright for my DD. As far as I was concerned she shouldn't have had the b**y condition in the first place!

Remember, CF is for life and some of the best support I have had has been from my antenatal friends who have never ceased to give me an ear to moan at, having my DD over for play and tea just so I can have a break from the endless round of checking and giving out medication.

The fact that you are on here asking for advice is a good start :-). I wish her all the best with getting to grips with the daily routine. Hopefully she will find a way of dealing with the condition, I don't know if you ever truly come to terms with it (I haven't yet) but you can reach a place where it just becomes part of normal life

linspins · 09/11/2013 22:26

Thank you Mintyneb. I understand about not truly coming to terms with stuff - sometimes you just learn to live a new kind of life...
Really glad to hear you Dd runs about and sings so much, lovely.
It's such a difficult thing for her to find out about her baby, and she said she looks at him sleeping so sweetly and just wants it all not to be true, or be able to take it away from him. Sniffle. I'm upset enough for them, I can't imagine what she and her family are going through right now. I'm keeping my fingers crossed that he stays well while she comes to terms with all the new care that is needed.

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elliejjtiny · 11/11/2013 17:30

Not experienced CF myself but my DS4 was diagnosed with a cleft lip antenatally and other problems at birth. Is she on facebook? There will be groups on facebook where she can share experiences with other parents of children who have CF. Keep saying how gorgeous her baby is and talk about all the "normal" baby stuff too. It really upset me when people didn't say congratulations when DS4 was born and having children with SN doesn't mean I don't want to talk about "normal mum" things like weaning and nits. I had a Barnardos befriender who was really good, she was another mum who had a child with special needs.

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