Dear Mr. Sparks,
I thought no more about it for two weeks; this was something that we would just have to contend with when the time was right. Then I woke up one morning and was sick. Sick in a way that I’ve not been sick before – not ‘ill sick’ but ‘nauseous sick’ and I just knew I was pregnant even though we’d been told it was practically impossible. I bought a test later that day and it confirmed my suspicions. I think I did about 6 more tests before I believed it! I wasn’t unhappy about it but just wasn’t expecting it and it took me a couple of weeks to even get my head round the idea of having a baby right now.
I had a scan at 6 weeks as a follow-on from the fertility test and there was a little broad bean with a heartbeat – it was amazing. The 13 week scan was great too as there was this tiny human, it was so hard to believe it was real. We had the 20 week scan just after Christmas and it brought a bombshell. The sonographer told us that we were having a boy but that his heart was in the wrong place and we would need to see a specialist from the Fetal Medicine Unit (FMU). This was a Thursday and the earliest that the FMU could see us was the following Tuesday so we had an agonising weekend with our imaginations flying everywhere.
We saw a consultant at the FMU who after careful scanning told us that our baby had a condition called CCAM – congenital cystic adenomatoid malformation of the lung – which meant that he had cysts growing in his left lung which was squashing the right lung and pressing his heart over to the right of his chest cavity. He said that the baby could develop lots of pre-natal problems but might go to full term and would require an immediate operation to remove the cysts. He said that the baby had about 40-50% chance of survival and gave us the option to terminate.
We didn’t even consider termination and so booked in for regular scans at UCH to see how he progressed. The scans became something of an event as CCAM is so rare and we had professors and consultants from Great Ormond Street Hospital, Kings College and a whole range of other doctors from UCH in the room to have a look at the scans. They also considered another diagnosis of congenital diaphragmatic hernia but at every scan they checked the diaphragm and it looked solid so this was discounted.
We were prepared for our baby’s stay in NICU and had tours of UCH’s neo-natal Unit and GOSH, where the baby would have his operation.
Meanwhile the pregnancy went well and we had a final scan at 35 weeks where we were told that the cysts did not seem to be too big and that the prognosis was good, the baby may not need an operation until he was a few months old but we should prepare ourselves that he still may need to be intubated upon birth if he wasn’t breathing well.
I was booked for induction at just over 38 weeks – as UCH is so busy they needed to make sure a neo-natal bed was ready for the baby and that GOSH were on
standby to receive him. Induction didn’t work at first, then the NNU got busy so I had to wait a couple of days before they tried to induce me again and I finally gave birth to Charley Frederick on 4th May 2003 at 12.20am. It was a long and difficult labour and he eventually was born with the help of forceps after a failed ventouse attempt.
He was put straight up onto my tummy and he made some tiny crying noises before he was whisked over to the resuscitation trolley by the neo-natal nurses. They quickly decided that he wasn’t breathing well and so intubated him and put a yellow woollen hat on his head to hold the tubes in. He was then taken down to NNU to be stabilised while I was stitched up and left wondering what was going to happen next.
We saw him again when he was about 4 hours old but only for a few minutes and we were each given a polaroid picture to keep. It didn’t seem real. When I woke up on the ward a few hours later it felt amazing that I had given birth to a baby but somehow he didn’t really feel like mine as I only had a picture to hold.
We saw him for a few hours that day but he was drugged up on painkillers and immobilisers to keep his tubes in place. All the machines were scary at first but we quickly learnt what were good SATS levels, breathing and heartbeat rates. My parents and sister also came in to see him.
Charley looked very strange physically in that his chest was huge and his stomach was concave – a bit like Superman! The NNU at UCH took a chest x-ray and said that the CCAM was worse than they thought and said it looked like he had a bunch of grapes in his chest.
He was very suddenly transferred to GOSH about 4pm on the day he was born as they had a NICU bed and he was deemed stable enough to go in the ambulance – it is about a mile and a half away. This was as shock as we were originally told it might be a few days before he was moved but I think that the x-ray made them realise he needed the surgeon’s care sooner rather than later.
I was still an in-patient at UCH so my husband (Lee) had to go to GOSH and check Charley in and report back to me by phone. He called several hours later with shocking news. Upon looking at a new set of x-rays performed at GOSH a doctor who was just passing by looked up and said – ‘That’s not CCAM, it is CDH’. Everything was being prepared for a lung operation the next day and it was all thrown into flux with the possibility of a CAT scan discussed to confirm diagnosis.
It was a very hard night on my own away from my baby and husband and everything that we were prepared for up in smoke and I had little information about this new diagnosis of CDH. I was finally discharged the next lunchtime and we went straight to GOSH. It was weird seeing Charley again as he looked so tiny in this intensive care bed lying under bubble wrap to keep him warm as he had developed jaundice. He had a personal nurse and all kinds of machines attached to him.
We spoke to a doctor who confirmed the diagnosis of a left sided Congenital Diaphragmatic Hernia without the need for a CAT scan. This meant that there was a hole in his diaphragm where his bowel had grown up into the lung cavity, squashing his lungs and heart and these would need to be replaced in the abdomen and the hole repaired. They explained that Charley would have his operation the next day and that depending upon the size of the hole in his diaphragm a patch may need to be inserted to fix the hole.
GOSH was amazing – the facilities were fantastic and the staff were brilliant. They found us accommodation 5 minutes walk away for the duration of his stay in NICU.
Charley had his operation on 6th May. We stayed with him until the anaesthetists wheeled him off to the operating theatre. It felt so strange – almost unbelievable what was about to happen. We went out and had some lunch, waited in the parents’ room, watched some TV but no news. Eventually we went back to our room and just climbed the walls – was no news good news??
After about 4 hours we gave in and my husband phoned NICU as I stood by anxiously. Then came the worst moment of my life as Lee heard the news and literally collapsed onto the bed saying ‘Oh God’. I just broke down - my baby had died – I felt the world caving in around me. Then my husband realised what I was thinking and told me that Charley was OK – he had collapsed with relief not grief. Charley had been back on the ward for about an hour but they were doing a ward round then getting him settled before they phoned us.
We rushed over to see him. The surgeon, Mr Ed Kiely, told us that the operation was a success. The hole was fairly small and they had not needed to insert a patch to fix it. They had also had to do an appendectomy as part of the operation as Charley’s appendix had ended up on the wrong side of this body. They had changed his ventilator and finally removed the yellow woollen bonnet so we could see that he had some dark brown hair.
He recovered well that night with Lee at his side but had a setback the next day when his abdomen distended and as we arrived to see him he was surrounded by worried doctors, ordering emergency x-rays. That was the second time I thought I was going to lose him and I broke down. It turned out to be trapped wind as his body got used to his new bowel layout and he was OK - Lee spent all night at his side again. I wasn’t able to as I was still recovering from the birth.
Two days after the operation he was extubated and put onto C-PAP to aid his breathing but he was doing well on his own. He was still a little up and down and we hung onto every change in his resps and SATS on the monitor.
Three days after the operation he was deemed well enough to be transferred back to the NNU at UCH. I was terrified about losing the intensive personal care that he had at GOSH but they had other sick babies waiting to come in. Back at UCH he had to stay in an incubator for a day while he was tested for MRSA and he was put under the lights again for his jaundice, which had got quite severe by this stage.
He continued to recover well and tolerated more and more expressed breast milk through a tube and came off C-PAP completely by the time he was 1 week old. It was also when he was one week that I was allowed to hold him for the first time. I was petrified as I’d never held a baby before – let alone a fragile, sick baby – but it was wonderful. He opened his eyes and looked at me.
He was moved to Special Care the next day as he no longer needed ventilation – it was quite scary not having him attached to any machines except a SATS monitor. He still had a feeding tube but we started to learn to breast feed with the help of a speech therapist and nurses. Charley fed reasonably well and got stronger by the day and we were discharged on 17th May when he was 13 days old.
The first few weeks were hard as we were so scared about his breathing and anything at all going wrong. The stress finally caught up with me; I developed mastitis and a breast abscess and had to abandon breastfeeding by 4/5 weeks as my milk flow disappeared leaving me very depressed.
At 10 weeks old we were back in hospital – Homerton then the Royal London as Charley started projectile vomiting and they thought he had Pyloric Stenosis, which would require a further operation. We waited anxiously for a scan while he was once again attached to a drip and machines but it was OK – he had a very bad case of gastroenteritis and recovered within two weeks.
Charley was doing well but he always had noisy breathing and a wheeze. He seemed susceptible to chest infections and was frequently on antibiotics. In December 2003 we were back in hospital again – UCH children’s ward this time – with bronchiolitis. They said that Charley most probably had asthma and we were given a spacer and an inhaler for him to use when the wheezing was really bad. It was impossible to use as he hated having anything put over his face.
We attended various hospital appointments and asthma clinics over the next few months and he was given a nebuliser to have at home to give him his asthma medicine as this was more effective and easier to use than the spacer. Apart from constant coughing at night and wheezing he was generally well and I returned to work in March 2004.
We decided that it would be beneficial for Charley if we moved out of London so that he could breathe less polluted air - we lived by the busy A10 - and in August 2004 we moved to Herne Bay in Kent by the sea.
Since then Charley has come on in leaps and bounds. We barely used his nebuliser in winter 04/05 and in summer 2005 he was discharged from the asthma clinic as he was no longer showing symptoms – he barely ever even wheezes these days. We have been very lucky in that he has never had any feeding problems or other CDH side-effects.
In May 2005 our daughter Scarlett Mae was born – we had extra scans during the pregnancy but she was fine aside from an umbilical hernia – seems like too much of a co-incidence though, to have another hernia in the family.
He has also recently started nursery school, which he seems to be really enjoying so far and we are all hopeful for the future.
Written by Charley’s mom, Kate Langford (Great Britain)