Our experience at lovelight photography

My partner Matt brought me ‘Bump to Baby’ Lovelight photography sessions for my Birthday which I was very excited for! I’ve never had a photoshoot before but was looking forward to capturing some pregnancy photos! We originally booked a date in late November for the shoot to take place, but due to Covid the Lovelight studio reached out to us and brought the shoot forward so that we wouldn’t miss out! Little did we know if they hadn’t of done this for us, we would have never had any of the beautiful images to treasure that we do today. This is because an hour after the pregnancy photoshoot I went into labour!

Our experience with LoveLight Photography is something my partner and myself will never forget. Although initially nervous our photographer Ellie made us feel at ease straight away as I stripped off to capture some breathtakingly beautiful images of my bump and partner.Sadly, our baby boy Charlie was very poorly after birth and later diagnosed with Cystic Fibrosis, we spent a total of 4 months in NICU and hospital. Because of this we couldn’t attend our new-born photoshoot. The staff at Lovelight Photography were so professional, accommodating and sympathetic of our situation. They pulled out all the stops and made sure to reschedule our shoot when Charlie was well enough. Through the whole experience social distancing and restrictions have been in place but this did not take away from Lovelight still making the whole process personal and intimate.

Charlie absolutely loved having his photo taken at the studio and it was so amazing to witness him smiling and giggling as the photographer Olivia entertained him between shots. We recently attended the studio for our photo reveal show with Zoe – I can’t put into words how moving this experience was, we sat comfortably in a private darkened room to witness the stunning images of our baby. We were both so moved by it all I cried floods of happy tears. The images are beautiful moments that have captured our journey frozen in time, the results have exceeded all of our expectations.

The support we have received from every individual at Lovelight Photography has been second to none and the service has been seamless. We are looking forward to spending more time with Lovelight photography in the future to create more treasured memories. We would like to thank Lovelight photography for showing us their love and shining their light into a very dark and difficult time in our lives.

Love, Matt, Gemma and Charlie our warrior

About Cystic Fibrosis

  • Cystic fibrosis is an inherited condition, which is caused when two people carry the faulty CF gene (usually without knowing).
  • It causes sticky mucus to build up in the lungs and digestive system. This causes lung infections and problems with digesting food.
  • Overtime severe damage is caused to the lungs, digestive system and other organs in the body such as the pancreas and intestines.
  • Often causing malnutrition, poor growth, frequent respiratory infections, breathing problems, and chronic lung disease. Which sadly lowers life expectancy.

Statistics

  • 1 in 25 carry the faulty CF gene
  • Around 10,600 people in the UK have CF
  • 1 in every 2,500 babies will have CF
  • If two carriers have a baby there is a 1 in 4 chance of the baby having CF
  • There is no cure for CF

Our journey so far…

On the 4th November 2020 I went into labour a month early with our baby boy Charlie. It was a huge shock when my waters unexpectedly broke after an enjoyable photoshoot at Lovelight Photography. After his birth we had no reason to suspect that anything was wrong, until it was discovered we were in fact both poorly with an infection – which may account for the early labour.

Charlie and myself were immediately given antibiotics. Sadly, while in hospital he struggled to maintain his body temperature so was transferred to a hot cot. Shortly after this we attempted a feed but this was followed by severe vomiting. Charlie was also badly jaundiced and transferred to NICU, this was when we started to realise there was a serious problem with Charlie’s health.

Most babies pass meconium (sticky baby poo) within the first 24-48 hours, but this did not happen in our case. His abdomen was extremely distended and hard, he arched his back and writhed in pain. It was then decided Charlie needed an urgent x-ray to examine his bowels which was sent to a specialist hospital, the bowel showed unclear irregularities. Charlie was rushed to a specialist baby unit in Brighton for emergency investigative surgery. The surgeon discovered Meconium Ileus (a life-threatening bowel blockage). The surgeon removed the bowel blockage and fitted Charlie with a stoma bag.

Charlie was then taken to NICU and put on a ventilator to help him breathe and recover from the operation. After surgery we were told by the surgeon that Charlie’s symptoms pointed to Cystic Fibrosis. Devastating news to us both. We were absolutely heartbroken for a very long time; dealing with a diagnosis never goes away and is an everyday battle. Neither of us have any family history of the disease. Furthermore, Charlie’s heel prick was also inconclusive. One of the difficult times for was waiting for a total of 3 months for complex diagnostic genetic testing to be completed.

As Charlie was too small for a sweat test and treatment for CF began immediately. Eventually Charlie was taken off the ventilator but remained in TMBU (The Trevor Man Baby Unit) for a month. The process of getting him to pass Meconium into his stoma was very difficult. He had to be starved of milk for weeks, put onto TPN in order to grow (a nutrient fluid passed into his heart) and very strong medications via cannulas. Finally, after further medical intervention with his stoma, he began to release tar like meconium. We began a very slow process of introducing expressed milk, a tiny 5mls every 3 hours, until eventually he could manage full feeds.

When Charlie was out of the danger zone he was transferred to ‘The Alex’ children’s hospital where we would live together for almost 4 months until he was well enough to finally come home on 22nd February 2021. Whilst in ‘The Alex’ sadly Charlie became very ill again, he was not absorbing nutrients from the feeds and his stoma output was very high, meaning he dramatically lost weight and became extremely malnourished. He was skin and bones which meant he had to have a canula put into his scalp. He needed a lot of different medications, physio (percussion on his chest and bouncing). Bloods taken daily, and his feet constantly pricked and squeezed for blood.

Charlie could not come home until he gained weight. Finally in January, thanks to medication and doctors Charlie began to steadily grow. He needed one more big operation to reverse his stoma and to get him pooing in the normal sense. Thankfully Charlie’s operation was successful and on the 1st February 2021 we celebrated our first dirty nappy, 89 days after his birth! Charlie went from strength to strength and on the 22nd February we were allowed to go home after 110 days in hospital, there were plenty of tears.

Challenges…

Dealing with Charlies diagnosis was one of the biggest challenges we have faced as a family. Also, because Charlie was born during a pandemic life was very difficult, especially visiting rules. In NICU my partner Matt and I were not allowed to visit Charlie together, and had to take it in turns alone. In hospital Matt was only allowed to visit Charlie twice a week. We also had a huge issue with accommodation as we lived 1 hour 45 away from the baby unit and needed somewhere to stay, (near impossible with Covid).

Thankfully the Ronald McDonald Charity supported us by providing us with free housing for parents of sick children right opposite the baby unit. Without this charity we would not have been able to be near our poorly baby. Life is different for us…but it doesn’t mean it isn’t wonderful! Sadly, CF is not a condition that can be simply managed at home, we have multiple clinic visits monthly to check on his progress and weight gain. We have a team of specialists, physiotherapists, nutritionists managing Charlie’s health, unfortunately he can’t just get better. Charlie has weekly cough swabs to see what bacteria he is growing, he then has treatments to treat these, some of which can be life threatening. Having a child with a chronic illness is tough and future hospital admissions will be inevitable.

We have to administer up to 6 medications twice daily, and Charlie needs enzymes with every feed as he can’t digest food naturally. He is intolerant of milk proteins so we have to avoid diary which cause severe digestive pains. We also have to keep a close eye on his bowel movements. There are current medical advances in the CF field, but Charlie has two of the rarest genetic mutations, so whether these will be treatments will be available to him is still unknown as he is in the 10%. However, we still hold hope for the future.

Highlights…

Despite all Charlie has endured he is a very happy smiley little boy. He is a real foodie and loves his meals. He has tried every single fruit and vegetable imaginable. Charlie has a high fat diet recommended by his nutritionist so we mix diary free butters, oils and creams into his meals. His favourite flavours are banana and strawberry! We have so much fun at home, and make the most of every single moment.

How to support

Cystic Fibrosis Trust

  • CF Week – Join us from 14–20 June where we will share stories of day-to-day life with cystic fibrosis (CF) and look ahead to what the future brings, on the theme of ‘we won’t stop’.