Tuesday, 12 March 2013

Joel's Journey With CCAM (Congenital Cystic Adenomatoid Malformation)

One Year on.. 

When I was 20 weeks pregnant with my son he was diagnosed with Congenital Cystic Adenomatoid Malformation (CCAM) on the bottom lobe of his right Lung. This is were part of the lung doesn't form properly in utero & the dead tissue starts to form cysts. My son's CCAM was type 2! Basically, one big cyst with lots of little cysts inside of it. When it was first found Joel was so small that the cyst on his Lung had pushed his heart right over into his left Lung. I was given ultrasounds every two weeks right up until I gave birth to make sure that my son didn't develop Hydrops, a condition where the internal organs start to fill with fluid which can lead to heart failure if not detected early. 

Fortunatly my son was one of the lucky ones & developed no complications whilst in utero & came into the world a screaming baby when I was 2 days over due! The first 11 months of my sons life, ignorance was bliss! he had a check-up with his consultant at 4 months old & we were told that because his CCAM was so small they didn't see any problems as to why he couldn't live a happy life without having to go through surgery. this of course was fantastic news! we went home happy parents that evening, but it didn't last long. Over the following 5 months Joel started to develop chest infection after chest infection, sometimes he would get one straight after the other & was always on antibiotics, so when we saw Joel's consultant again at his 11 months check his consultant booked Joel in for a CT Scan so that he could take a closer more detailed look at what was happening. on 31st August my son was put under general anesthetic & his CT Scan we ahead, it took 30 minutes for the scan to be complete but to me, 30 minutes felt like 2 hours! after the scan Joel was taken over to the Children's Day Ward in Leeds General Infirmary to come round. 

After Joel had come round & they were satisfied that he was well enough to go home, off we went. Life then carried on as normal.. A few months past & Joel celebrated his First Birthday then in October 2O11 we got an appointment to see Joel's consultant. 
On the morning of our appointment I was a total wreck, my instincts were going wild & thinking back now, I was right to be so worried. when we saw Joel's consultant he confirmed our worst fears, Joel's ccam had continued to grow after birth (which is very rare) & it was once again pushing heart over into his left lung... the consultant explained a few more things & then told us that he wanted to preform surgery as soon as possible! before winter arrived & Joel's chest infections got even worse than what they already were.. A few days after our appointment we received a letter in the post. Joel's operation was to be done on 14th November 2O11, I vaguely remember looking at the letter then completely breaking down in tears, what Mum wouldn't right? the next few weeks passed in an utter blur & soon the operation was right on top of us! 
so on 13th November 2O11 Joel was admitted to hospital ready for surgery the next morning at 8.30am! 

At 8.30am I cuddled Joel in my arms & walked down to theater with him, he was put to sleep & then I was walked back to the ward with one of the nurses breaking my heart - watching your son being put under has got to be the worst experience I have ever been threw, he fought it right until he couldn't anymore & there was absolutely nothing I could do :( once I got back to the ward I sat in the family room pulling myself together & waiting on my mother in law & husband to arrive, it was then that we left the hospital to get some air & for me, some breakfast! 5 HORRIBLE long & agonizing hours later we were back on the ward & the call came at the nurses station to say the operation had been a success & our son was in recovery waiting for cuddles from his Mummy & Daddy. I couldn't help myself, I completely bolted & flew all the way to recovery leaving my husband to catch up. When I got there though, I was not prepared for what I saw next, my son was covered in wires, tubes & bandages! :( he was crying & very groggy! 


The next week spent in hospital was the most heartbreaking & frustrating time of my life. I had to watch my son in pain & there was nothing I could really do other than cuddle & comfort him! I did absolutely everything for him, when family came to visit I got him out of bed for cuddles so that I could change it (his chest drain would leak alot) & I even started to give Joel his medications & pain relief because he wouldn't let nurses near him & he'd become to distressed, so as long as there was a nurse present I was able to give him his medications & pain relief myself because I was the only one he'd take it from. Luckily by day 3 in hospital Joel started pick up a little, he was more awake & finally he started to eat! it was his nanna who fed him his first meal, since his op! shepards pie followed by two helping of ice cream! I just remember his nurse smiling & saying, "well he was really ready for that" :) 

 On day 5 Joel seemed to want to get up out of bed so we would sit him in his chair with pillows to watch tv or we'd carry him down to the play room for an hour just for a change in scenery but he'd still get tired & sore very quickly so these energy bursts never lasted too long before he was crying to go back to bed so that he could sleep. 

On day 6 Joel's chest drain was cleaned & he was given an xray to see if his lung had inflated enough for the drain to be removed. the results came back the next morning & the answer was yes, he was able to have his drain removed & we were one step closer to being able to go home! :) Later that afternoon Joel's consultant came to see him & remove his chest drain & because I had heard a young boy having his removed earlier that day I was a total nervous wreck, I expected crying & screaming from Joel too, but he didn't make a peep! He winced a little when the dressing was removed but that was it, he was soo brave! 

Day 7 & we got the all clear to go home! WOHOO! soon as we stepped foot in the door it was like Joel had never been through the pass 7 days he just changed, energy seem to come out of nowhere, he was playing with his toys & back to being his cheeky self in no time. 

Joel is now 1 year post op & he is a total different child. No more chest infections & being ill all the time, we are able to organize days out with friends because im not having to constantly say "i'll see how Joel is" life is absolutely great. Joel had his latest appointment with his consultant in September 2O12 & he told us that he doesn't want to see Joel now for another 12 months :)) FABULOUS RIGHT?!!! 

So we are now living life to the full, as a normal family. if you looked at Joel today & you didn't know you wouldn't think he'd been through what he has. He's my little diamond, my true warrior & I love him so very much. Everyday he surprises me with something new, I never thought i'd ever see this day so I am very much the happiest Mummy alive, I am truly blessed. 


Joel is now happy & healthy just like any other 2 & half year old toddler his age & its all thanks to hs consultant Mr Crabbe & all the staff at Leeds General Infirmary. I thank them from the very bottom of my heart for everything that they have ever done for my son, I am one very grateful Mummy. :) 


  1. I have just read your blog and hope you dont mind me saying that You have a gorgeous little boy! you are an inspiration to every mother out there with pst natal depression. Keep strong xsophiex

  2. Thank you so much, you honestly don't know how much that means to me! Xxx

  3. Ah such a lovely post. How awful for you (and him!) to experience an op at such a young age but he sounds like such a brave little man and you sound like the best mummy! Children pick up so much of our feelings and you must have been so strong to keep him calm through all of it! He will be so proud of you when he's older! Glad to hear he's so much better.