I have this as a page on here but wanted to give it a mention as a blog post too.

CCAM is such a newly found condition that so little is know of the prognosis or of the long term effects.  Doctors have no idea if half the population are walking around with CCAM not knowing they have them as  antenatal scanning has only improved so much over the last 5-10 years.  They also have no idea if once removed CCAM’s can reoccur- we are keeping everything crossed they can’t!

CCAMS- Congenital cystic adenomatoid malformation

At my 20 weeks scan with K we had gone through most of the checks when the radiographer said she could see something in the babies lungs.  Another radiographer was called in and agreed that something was amiss.  They kept me lying on the table while they quickly got hold of my consultant, I was already a complex case due to my first pregnancy- I will do another post on it soon.

My consultant came down and spoke to us and told us there was something wrong with our daughters lungs, they could see details on the scan that shouldn’t be there but couldn’t be sure what they were.  They gave us two possible reasons either CCAM’s or a diaphragmatic hernia.  They advised that either could be fatal and that we would need a lot more tests.

We went home and cried tears we didn’t think we had, we went to R’s grave and begged him to mind his sister as we couldn’t get through burying another child.  We then went home to try and figure out what we would do before we returned to the hospital the next morning. I spoke to my dad and R for hours trying to get my head straight I knew I wanted to give the baby every chance we could.

The next day we went back to the foetal assessment unit and declined the amnio that they had hoped to do there and then.  We also said we wouldn’t terminate the pregnancy and would continue no matter what.

My pregnancy after that became even more medicalised.  I was already on aspirin and daily injections of clexane but had to now attend hospital weekly for scans with heart specialists and with my consultant.  We had numerous doppler scans and they kept track of the growth of the cysts within her lungs.

Thankfully they ruled out the hernia but they did stress the cysts could grow and reduce both the lung function and weaken her heart.  We were also advised that if I went to term (I would have a section at 37 weeks) then with her first breathe the cysts could grow and stop her from breathing.

We went through the rest of the pregnancy panicking over this diagnosis as well as worrying about if she would be born early due to Pre-eclampsia or if she would be healthy.

At just over 36 weeks I was taken in on bed rest and a couple of days later K was born by c-section.  She was 6lbs 1oz and was taken away to be checked over.  They brought K along with her daddy up to NICU to be checked over but said she was breathing well and could stay with me on the ward.

We had to stay in the delivery suite for another two days until they stabilised my pre-eclampsia but K was with me at all times.   We stayed in hospital for 5 days and when they told us we could go home I remember asking the consultant if he was sure!

The next few months went well and K had chest infections etc but nothing too serious.  On boxing day she was hospitalised with broncholitus and got home only to have to go back in again.  Over the next couple of years she had Cat scans and multiple x-rays to keep track on the condition of her lungs.

When K was just over two they decided that she needed surgery as the cysts were not disappearing and had instead lumped into one large cyst taking over a lob of her lung.  At 27 months old K went in for surgery.

K was taken down at 09:00 and finally came back to the ward after 17:00 the cysts had got infected at one time and had stuck to her chest wall making surgery more difficult and therefore taking a lot longer to perform.  K was very ill for a few days she had an epidural,morphine, drains, drips etc and she kept having nightmares and we couldn’t even cuddle her.  One day she broke my heart by saying ‘daddy I scared’.

The surgery was done on the Monday and on the Thursday night they removed all drips, morphine etc and within hours she was walking up and down the ward, shaking but determined. We went home on the Friday and she took it easy for the next couple of weeks.

Since then K has had a few more hospital admissions where unfortunately no-one has ever heard of CCAM’s and they look at us very strangely.  Thankfully over the last 18 months we have had no admissions and she seldom needs to use an inhaler- the last time it was used was around Christmas.

K still has to get MRI scans but hasn’t had one for a while now I think the next one will be in January as this is still a very new condition and they don’t know if the cysts can regrow in another part of her lung.

In looking at K you would never know anything was ever wrong with her.  She is a lively 5 year old full of fun and mischief and full of life.  She has a scar under her arm that is usually covered by her t-shirt and another smaller scar where the drain was sited further down her back.

My baby girl is amazing and such an inspiration