Cystic Fibrosis
2 weeks ago my son was diagnosed with Cystic Fibrosis. It was devastating.
The 2 week window after the heel-prick blood test results had passed, so I was feeling happy we had 'no news was good news' when the health visitor called up and requested my husband and I be around in the morning as people from the lab wanted to talk to us. "they prefer to speak to both parents". I kind of knew there was going to be unexpected news.
The health visitor and a nurse arrived at our flat, sat us down and quickly told us that he had high levels of something from the heel prick test and wanted us to come in and talk to the doctors. It felt like a concrete slab had been whacked in our faces and we were both distraught both during their visit and after.
They had made us an appointment and a few hours later we went off to the Royal Marsden Hospital for Henry to have a sweat test done to definitely confirm he had the illness. Now they said don't Google but of course I did, I like to know all the facts good and bad and see both positives and negatives rather than learn much worse news down the line. Online it said babies skin can taste salty so when I kissed him I realised this was the case so I knew to prepare myself for the diagnosis of CF.
We met the same nurse and another one along with a doctor who were all friendly and kind to us, giving us a few facts and information and telling us that this news will be a shock but there is much we can do to manage this illness.
We were told about the Cystic Fibrosis Trust which have a fantastic and informative website and YouTube channel.
We were told how his pancreas has problems digesting fats and that we should feed him an enzyme called Creon to help him absorb the milk.
We were told that we are both carriers of the CF gene and that he had a 1 in 4 chance of having CF.
We were told that all my breastfeeding problems over the first 2 weeks made sense as he was not absorbing enough food so was hungry all the time which is why he wanted to feed every hour and slept very little and wasn't putting on weight.
The health visitor and a nurse arrived at our flat, sat us down and quickly told us that he had high levels of something from the heel prick test and wanted us to come in and talk to the doctors. It felt like a concrete slab had been whacked in our faces and we were both distraught both during their visit and after.
They had made us an appointment and a few hours later we went off to the Royal Marsden Hospital for Henry to have a sweat test done to definitely confirm he had the illness. Now they said don't Google but of course I did, I like to know all the facts good and bad and see both positives and negatives rather than learn much worse news down the line. Online it said babies skin can taste salty so when I kissed him I realised this was the case so I knew to prepare myself for the diagnosis of CF.
We met the same nurse and another one along with a doctor who were all friendly and kind to us, giving us a few facts and information and telling us that this news will be a shock but there is much we can do to manage this illness.
We were told about the Cystic Fibrosis Trust which have a fantastic and informative website and YouTube channel.
We were told how his pancreas has problems digesting fats and that we should feed him an enzyme called Creon to help him absorb the milk.
We were told that we are both carriers of the CF gene and that he had a 1 in 4 chance of having CF.
We were told that all my breastfeeding problems over the first 2 weeks made sense as he was not absorbing enough food so was hungry all the time which is why he wanted to feed every hour and slept very little and wasn't putting on weight.
A huge and devastating shock to us as a family but over 2 weeks have passed since this diagnosis and we are slowly coming to terms with what the future may hold for us and our baby.
I think the main thing I feel is joyless. After what was a slow and hellish experience of labour and the aftercare in hospital, 2 weeks of no sleep and struggling with breastfeeding the thing keeping me going was the excitement of the future. But now I feel there is a dark cloud hovering over our future, I don't want to have to tell my child that he is ill and has to keep going to hospital, I don't want to tell him that he can't have children naturally and i don't want to tell him that his life expectancy is limited. Yes, I know research, medicines and equipment are improving more and more, it was only 1989 when the gene was even discovered,but although i am 75% positive there is 25% spent thinking about the realities of this chronic illness.
I think the main thing I feel is joyless. After what was a slow and hellish experience of labour and the aftercare in hospital, 2 weeks of no sleep and struggling with breastfeeding the thing keeping me going was the excitement of the future. But now I feel there is a dark cloud hovering over our future, I don't want to have to tell my child that he is ill and has to keep going to hospital, I don't want to tell him that he can't have children naturally and i don't want to tell him that his life expectancy is limited. Yes, I know research, medicines and equipment are improving more and more, it was only 1989 when the gene was even discovered,but although i am 75% positive there is 25% spent thinking about the realities of this chronic illness.
This is us. We have a baby boy with CF. He is now 4 months old. I hope Henry is doing well. Xxx
ReplyDeleteHi Jennie
DeleteThank you for your comment. I have just read your blog and it sounds familiar to what we have dealt with so far. Henry is doing really well and i hope your little one is too? Are you on instagram? It's a really good way of meeting other mum's with CF kids online xx