25 November 2019
Callum Axford's Story
At my 20 week scan we found out that Callum had Congenital Diaphragmatic Hernia (CDH). That meant Callum had a hole in his diaphragm, so his stomach contents had moved into his chest, preventing his left lung from growing, and pushing his heart into the right lung. We were transferred to Kings College Hospital, and a termination was suggested as CDH is a very serious condition, and 50% of babies do not survive. We decided to start the fight for Callum to survive.
I had to have full bed rest, steroid injections, and amniotic fluid drained from my stomach as Callum was unable to swallow it. Due to complications with my pregnancy I was admitted into Kings College Hospital at 29 weeks. Callum was born prematurely at 33 weeks. As soon as he was born he was paralyzed, sedated, put on life support, and taken to Neonatal Intensive Care. Hours later I saw my baby boy for the very first time, in an incubator, full of wires and tubes breathing for him.
Callum had his first operation at 3 days old, in which they brought his stomach contents back through the hole and used pig skin to fill the hole. Callum remained in Kings College Hospital NICU for 8 months, having more operations, being pumped with so many medicines, blood transfusions, and needles everywhere even in his head. I held him, covered in tubes, for the first time when he was 4 weeks old. We have lost count the amount of times we were told Callum may not survive, numerous times we would be asked to leave the room, not knowing if when we came back our child would be alive.
When Callum finally came home, he was on oxygen 24/7 and had a gastrostomy feeding tube. At this point Callum had been diagnosed with CDH (repaired), Pulmonary Hypoplasia, Chronic Lung Disease, Oral Aversion, Food Aversion, and Development Delay.
Callum at Birth
Over quite a few years we progressed from full tube feeding, to oral syringe feeding, to blended food, and to date Callum no longer has his tube!
He eats mashed up food and actually loves to be around food now, which is something I never thought would happen.
However, as time passed, we knew as parents something wasn’t right with Callum's development, and it wasn't just because of such a long time in NICU and being on life support. Callum started sitting at about 2 and a half, he started walking un-aided at 4 years old, but he has balance and co-ordination problems, and cannot walk up and down steps, on uneven ground etc without support. Callum also had unexplained light brown marks on his body (which we now know as Cafe Au Laits) and was always scratching. Unfortunately, our local Child Development Doctor at the time was very unsupportive, however, we did not give up. Finally, when Callum was 6 he was referred to GOSH, and there he had an MRI under general anaesthetic.
I will never forget that moment when Carl and I went back to GOSH, without Callum, to hear the results of his MRI. The Consultant told us that Callum has Cerebral Palsy. I actually felt relief at hearing this diagnosis. Finally, what we had thought for ages was being confirmed, and now with this official diagnosis we could get Callum the help and support he so desperately needed, and deserved. The Consultant said he was actually surprised to see the extent of the brain damage, after meeting Callum and seeing how well he has done. However, he then said he was very sorry to tell us that the scan showed another condition, Neurofibromatosis Type 1 (NF1), including Optic Tumours. That feeling of being at my 20 week scan came over me, as I was being told about another serious condition I had never heard of, although I later found out that like CDH, NF1 is also as common as Cystic Fybrosis, but yet again with poor awareness and research it is so unknown.
Callum at 6 months
So, we now know Callum has Congenital Diaphragmatic Hernia (repaired), Chronic Lung Disease, Pulmonary Hypoplasia, Cerebral Palsy and Neurofibromatosis Type 1 (NF1). We now have more hospital appointments than ever before but are so thankful that Callum is seen by all the necessary people, including the NF1 Clinic at Guys Hospital. As far as we know he is the only person who has all these conditions.
Callum has made remarkable progress, he is a very determined happy little boy, who never gives up. Callum currently has leg splints and has had leg serial casting. He relies on help when walking outside of his home, and his little sister Sophie (age 5) is a fantastic support for him. He has a wheelchair for long distance, and a supporting chair at school, where he has an EHCP and 1 to 1 support. Callum is a clever boy, but he requires certain techniques in order to learn, and uses a computer more as he struggles with writing. Callum has home oxygen, but no longer requires it 24/7. He has inhalers and nebulisers and is getting to know himself when these are needed.
Callum has always had difficulties sleeping. He cannot close his eyes on demand, so they only close when he is literally so tired, they close automatically. He has Melatonin every night, which is taken by many people who have NF1. Soon he will be seen at the Evelina Sleep Clinic.
Callum is also in the process of having tests under the Endocrine team at the Evelina, as his bone age is that of 5 and a half years old. No one knows why he isn't growing at a good rate; which Callum does find a little frustrating as he longs to be taller like his friends.
The past 9 years have been tough, there have been many times when I have sobbed into my pillow, screamed why? and thought to myself I can't keep fighting for everything, but then I get myself together again, and think to myself if my little boy can be super strong with the best attitude to life, them so can I. There is no cure for Callum, but to get the diagnoses is half the battle, and once you have them and you start to tick the boxes, and realise why he has these marks, why he does the things he does, it all starts to make sense, and then you can move forward. We have never given up, no one knew if Callum would walk, talk, eat, go to mainstream school, and although there are challenges with all these he is doing it!
– Callum's Mum Faye
"We have never given up, no one knew if Callum would walk, talk, eat, go to mainstream school, and although there are challenges with all these he is doing it! "
Of course, as Callum's parents we think he is amazing. He has gone through more in 9 years, than many will ever go through in their lifetime. However, we do receive so many fantastic comments from everyone who meets Callum. He does light up a room with his smile, laugh and funny ways, and this month the panel at the Pride of Essex Awards thought so too, as they presented him with Child of Courage Award 2019!
A couple of years ago Callum became a Rays of Sunshine Wish Child. From this wish Callum has had just the most amazing time, and is now an ambassador for the charity, and a member of their choir. From going to Disneyland Paris, to singing with Alfie Boe at The Royal Albert Hall, to being invited to the Arsenal Player Ozil's house! We are so thankful to them for giving us so many amazing memories, to cherish forever.
"We are so thankful to them for giving us so many amazing memories, to cherish forever."
You may have seen Callum earlier this month when he took part in BBC Children in Need Bargain Hunt with Sooty and Debbie McGee, and then later that evening was interviewed live by BBC London for Children in Need, to talk about how their donations help fund Rays of Sunshine Hospital Activity Days across the country. Callum was fantastic on TV, and a lot less nervous than me!
NF1 is such a complex serious condition, but it is not given enough awareness and funding into research. A benign tumour is not fine! With all Callum's conditions he truly is a little warrior. He faces battles daily, and will never live a 'normal' life, but I know his personality alone will see him through and I know he will never give up and think poor me.
"NF1 is such a complex serious condition, but it is not given enough awareness and funding into research. A benign tumour is not fine! "