Written by Juliette
This week Sammy has moved into a second stage car seat and now faces forward. He loves it; he can take in the world as it goes by the front windscreen instead of being bored with the view of the back seat or the sky. Every day when I look behind me to reverse off the drive he smiles at me with big eyes. Yes, he's very happy with his new car seat.
As Mark mentioned in his last post Sammy is over one year now so I have been a bit reflective about our experiences but now I'm ready to face forward just like Sammy. Here are my musings and a recap of the year just gone.
Samuel was born to doting brother Joseph, Mark and me. For the first few weeks he seemed like any newborn but just a few weeks later we knew something wasn't quite right. He was feeding constantly, only settled in my arms and didn't sleep! From 3-7pm I'd feed him without a break, 'cluster feeding' I was told. Once he was asleep in my arms we warmed his cot a little with a hot water bottle and then put him down. He would sleep in there for 30 minutes if we were lucky. Then the whole process of feeding to sleep would start again and last all night. Despite eating constantly day and night he was not putting on weight and by 6 weeks old he had fallen off the bottom of the centile chart. I took Sammy to the GP twice for what we thought was silent reflux and we tried two different medications. I was going to take him again the next day because I noticed that even after feeding his lips looked dry and on some occasions his fontanelle was a little sunken. These are signs of dehydration, so I was getting worried. A day later on a Monday morning I received a call from our health visitor explaining that a nurse from a large specialist hospital (not our local hospital) wanted to come and talk to me about the results of the newborn screening test and did I have someone with me? I knew it would be bad news because she had checked I had some support so I got Mark to come home from work immediately. If you want to read about how we received the diagnosis you can here.
So Sammy was diagnosed at 7 weeks old with Cystic Fibrosis, a genetic condition of the lungs and digestive system. Mark and I had no idea we each carried a faulty gene. Immediately after diagnosis the Cystic Fibrosis (CF) Team started him on a number of medications including meds for reflux, but the most dramatic one was Creon, a fat dissolving enzyme. The reason the effects were so impressive was because it compensated for one of the problems Sammy had been suffering from. Although his body makes this enzyme, the tubes it travels down from pancreas to stomach are all blocked with mucus caused by the CF. As a consequence, Sammy doesn't digest any fat in his food or get any of the fat soluble vitamins either. For the 7 weeks prior to diagnosis Sammy was starving. Nothing he ate satisfied his hunger. This is the reason he wasn't putting on weight, fed constantly, didn't sleep and wouldn't settle. Did I mention he wanted to be held a LOT or that he screamed for every car journey even if he'd just been fed minutes before? The Creon enzyme is given for every food which contains fat and has to be calculated so that he receives the correct amount for the quantity of fat in each meal. He is currently having about 15-20 doses of Creon a day. Initially Sammy's milk intake didn't decrease but we could tell he was satisfied from the food as he was settled after each feed. He played catch up for a long time whilst he put on some weight and then the number of feeds eventually became more manageable.
I want to say here that we are so extremely grateful for the work of the Cystic Fibrosis Trust who campaigned to get CF included in the newborn screening programme for every baby in the UK. Without the simple heel prick test we wouldn't have received a diagnosis for possibly months until someone had figured it out. Sammy would have continued to lose weight, not sleep and could well have had damaging chest infections. He would have been in a terrible state if he had been diagnosed late. With an early diagnosis it has given Sammy the best possible start. I also want to share something I read after a BBC drama 'Call the Midwife' featured CF in the storyline. In the 1950s and 60s before a lot was known about CF, children with the condition usually died in infancy or early childhood. This would have mainly been because of the child's failure to thrive and any infections would have been difficult for a malnourished child to fight off. What I read was that some mothers were either nearly or actually sectioned as their health professionals believed they were not feeding their babies. I can totally identify with this, feeding a baby constantly is exhausting. Then add complete sleep deprivation to the mix and you can imagine why mothers may have become or just appeared depressed. Then you have a health professional who sees a starving, underweight baby and a mother who says she feeds all the time but that doesn't add up. I can see how it happened and I'm so grateful for the newborn screening and the amazing advances in treatment.
Following diagnosis we had 9 really tough months but for various reasons but after those months things started to settle down a lot and we are now ready to face forward.
Part 2 to follow.