Has anyone adopted a child with cystic fibrosis? Looking for insight and info.

[Bringonthesunshineplease]

Hi we have been linked and go to matching panel next month. We have recently received their updated LAC Medical and it mentioned when testing for cystic fibrosis that it was inconclusive and need to be rechecked.

Our SW in away, the family finder SW is away and we will not be speaking to the Medical Advisor until a few days before we go to panel. We are committed to going forward but this has thrown up a few questions. We obviously don't yet know if it there is cf as its inconclusive. I'm wondering if any adopters have adopted children with this if you could give some insight on how its impacted your child and positive ways to deal with an adopted child who has cf. The child is pre-school aged and not a baby. From my brief google search it seems this is generally diagnosed when children are babies but I guess not.

Thanks in advance for any info.

Sorry, no advice, I just wonder if it would maybe help to post under Children's Health as well? It won't be any help from the adoption angle but you might get some good advice about physically caring for a child with cf.

Hi, I have not adopted a child but my DD has CF. You are right that CF is usually picked up as a result of the heal prick test and diagnosis is confirmed when the baby is 3-4 weeks old. The family will be referred to a specialist clinic and a daily regime of physio and medication will be started.

However, it is possible for the screening not to pick up CF and the child doesn't get diagnosed until they're older. This puts then at risk from potential lung damage if they have had untreated chest infections etc in the meantime.

So if there is any hint that the child could have CF then for their own sake they should be retested ASAP.

I only have the one child so can't comment on how it might affect a sibling. However I would just say that my 7yo has just finished the last school year with 100% attendance, does two 1.5 hours of gymnastics each week in an advanced group and sings and dances to her hearts content at a Saturday drama group.

Yes, she throws up some extra challenges but so far the CF is not ruling her life

This is a hard one, having adopted 2 with life threatening diseases (not CF) I went through a few wobblies but did come to the conclusion that these children need a "forever" family as much as any other child and although both died we do not regret a thing. Our homegrowns were obviously devastated, I know it made them far more caring, we were completely honest with them. In fact it was them who encouraged us to do it again!!

Re CF as a very old paediatric nurse medicine has moved on and their quality of life and life expectancy has improved so much.

Good luck

My friend's dd has cf and she is a happy healthy little girl who swims, plays tennis etc. etc. However she does have drugs to take to help her absorb fat, needs physio twice a day (but has a vest that does it for her saving valuable time), have to be careful of standing water such as damp towels, plants and needs lots of care for every cough she gets. It is tough for my friend but on the surface her dd lives a normal life. It is just a lot of extra work behind the scenes to make sure she stays well. Also, at the back of my friends mind is the knowledge that she will probably outlive her dd which is an upsetting thought.

I have looked after a child with cf for a couple of years and still see regularly. I agree with minty this is almost always nowadays picked up from the heel prick when they are new born.

I am surprised this was inconclusive and then not followed up although if the child was with bm in a chaotic environment I guess it could be missed, but then it should have been picked up as needing confirming, one way or another, when the child had the medical soon after being fostered.

If the result is negative that is great. If it is positive I would imagine there would be more than usual lung damage from the infections the child has probably encountered.

I hope it works out well for you bringon

Hi there

So sorry you are having this worry - communication between medical and social professionals over health records is so rubbish. I know nothing about parenting a child with CF but a bit about screening programmes.

Was it listed in with the other newborn screening tests eg sickle cell, PKU? There's a list of about 6. If it appears that it's the newborn screening test that was inconclusive you may find this link helpful. Doesn't seem an uncommon scenario.

newbornbloodspot.screening.nhs.uk/getdata.php?id=11188

It sounds as if it's unlikely to be the case that the little one has CF - and if they are preschool age and are well I would think that is at least some reassurance. Sounds more as if the test was inconclusive and they have screwed up either a) on doing the repeat test or b) recording the result clearly.

When you can get hold of someone, grab them and demand answers. Don't be too reticent. With DC1 I felt as if asking too many questions would make it seem I wasn't committed to the child. Come DC2 I realised that asking questions about everything was what I needed to do to be this child's best parent. (This was after DC1 nearly had an unnecessary operation because we hadn't had the correct info from their medical records!)
Good luck with it all and congratulations on your match!

Hi all. Thanks for the responses to my question. The information is great and helpful. We are still waiting to find out if this has been retested and managed to get an appointment with their LAC medical adviser next week so for now are in limbo. Thanks again for taking the time to respond!

Happy update. All clear . One less thing to have to worry about with matching panel looming. Thanks all for the info.

Great! Good luck and hope it all goes well