Back in May 2010 we welcomed our gorgeous son, Archie into the world. He looked perfect in every way. Slowly as the weeks went on, he kept having breathing difficulties which doctors just keep saying he would grow out of it. As the next 5 months past and stays in hospital regularly came and went, I noticed his head shape changing but again I kept being dismissed and being told its just flat head it will improve.
More months past and his head was getting worse, but we were still being dismissed, it was only after another emergency hospital admission that our journey was about to get a lot worse! A doctor came and asked us what type of Craniosynostosis he had. Sorry what? Cranio? He doesn’t have that. The doctor apologized and said she suspects he has undiagnosed Craniosynostosis and arranged for us to see our pediatrician and have a CT scan. We were so confused after being told its nothing to worry about and that its just flat head and now it’s something called Craniosynostosis. What is this? I then made the worse mistake that a lot of parents do. I went to doctor google. Fusion, brain damage, ICP, development delay, breathing and eyesight issues, helmets, all these worrying words jumping out and even words I couldn’t pronounce (back then I couldn’t even say craniosynostosis correctly 🤣🙈) by now we were freaking out and so scared. All the information I was seeing was mainly from American sites, one site said one thing another said something else. I couldn’t find a lot of information and research based in the UK.
After a bit of searching I came across the website called Headlines Craniofacial Support and joined their Facebook page. I was so glad to finally find people who understood what we were going through and was pleased to hear that though Craniosynostosis can be serious, if diagnosed and treated early it doesn’t always mean all those scary words I had previously read.
Finally, 4 months later we attended the specialist centre Great Ormond Street hospital and they finally diagnosed him with Sagittal Craniosynostosis but at this point they were concerned about a few things, he wasn’t attempting to talk much and with his breathing difficulties they wanted to investigate further.
When he was 18 months, he had 5 days of assessments. From there we discovered they suspected a syndrome and that he had many development delays. They also arranged to have his airway investigated. Blood was taken for genetic test and camera put down his airway. A few weeks followed no news on genetics testing, everything they were suspecting was coming back negative, but they were sure there was something, so the search continued but we did finally get a get a diagnosis for his breathing difficulties, he had a condition Subglottic Stenosis. At this point his airway was 10% smaller than it should have been, but they weren’t too concern and just wanted to monitor it. We were given the go ahead for his cranio surgery. However, time came and went promises of surgery dates and cancellations continued for up to a year. Then when he was 2 and half during another check up on his airway, they found it had decreased in size even further. Now it was 50% the size it should have been. Surgery was required and fast!
They explained that normally the procedure was done in 2 stages but they wanted to do it in one stage so they could avoid giving a tracheostomy. We gave the go ahead, we didn’t have a choice he needed this surgery so his cranio surgery was put on the back burner.
2 weeks later surgery went ahead. We were told it be a 10 day stay in hospital. 3 days in ICU fully sedated. Can’t even explain how we felt about this. We wouldn’t have our boy for 3 days as he would be asleep. While we would see him physically, we weren’t going to see him, his personality. However, surgery went well! But when day 3 came and they checked his airway they said he needed to stay sedated a bit longer. So, day 10 came and finally he was being woken up, can’t explain the joy when we saw him open his eyes. But soon it became clear something wasn’t right as we were being transferred to the ward. He was starting to have withdrawals to the meds. They become so severe, the worst the hospital had seen in a long time. They had to quickly put him back on high doses of the meds he was withdrawing from. He was having bad hallucinations, dinosaurs were attacking him :-(, he didn’t sleep a wink or eat or drink for 3 whole days. He lost the ability to move his body. He had to be tube fed. It was like he was soulless.
During this awful time my family was a huge support as well the members on headlines. I made some brilliant friendships with some mums who still mean the world to me. Without them I would have broken. So I wanted to give something back, I wanted UK families being able to find information and support in the UK easily not struggled like I did, so November 2012 with the help of the close friendships I made online, Cranio Ribbons was founded. We aimed to spread awareness and educate about Craniosynostosis and also to make pin on ribbon badges, selling to raise funds in aid of Headlines UK to say thank you for their help. We didn’t expect it to hit off as well as it did! We had to get some more mums on board to help make ribbons. As I was still at Great Ormond Street Hospital with my son, they got busy making ribbons while I focused on the Facebook page. This helped keep me sane.
Slowly the meds started to calm Archie down and he was improving. He was being wean off the meds very slowly. 18 days later he was well enough to go home but still on a med weaning plan. After 4 long weeks we was going home on the condition we stayed at my dad’s with a hospital close by and that we returned to GOSH a week later. Woo Hoo we were free! 🙂
Day 2 at home Archie didn’t seem himself, I just put it down to that he was tired. Then day 3 his breathing deteriorated so we took him to A&E. They gave him a neb and sent us on our way. He seemed a little better but a few hours later he got worse we had to call 999. Again, hospital sent us home. This went on for another 3 days despite me says he has had major surgery on his windpipe and to call GOSH. Then the day before we were due to go back to GOSH he started gasping for breath in his sleep and didn’t wake easy. So, I called GOSH begged them to help as we had been sent home so many times from the other hospital, they said to call 999 straight away. He was rushed into recess where they diagnosed, he had croup. I demanded they call GOSH. Early the next day we were transferred by ambulance to GOSH. He went into theatre. He was due out in about an hour and half. 30 minutes later I got a call to say we need to come back to the ward so we went expected to see Archie but instead I saw a doctor with sadness in her face, she said Archie doesn’t have croup he needs an emergency tracheostomy to save his life as his airway had collapsed due to an infection likely to have been caused from low immune system when he was having withdrawals. Looking back now, I still don’t know why I asked but the first thing I said was he will be able to talk? They said no. My heart stopped. Me not going to hear my boy talk or cry. This was my worst nightmare. I thought the last 4 weeks couldn’t have gotten worse, but they just did. Finally, surgery was done, and we were able to see him. As soon as he saw me, he said mummy. He spoke!!! He said mummy! I just sobbed. 😭😭 The doctors were shocked. This boy liked to prove people wrong. Another 4 weeks at GOSH spent learning how to care for a child with a tracheostomy, learning how to do CPR, realizing just how serious this was, how life threatening it can be. Waiting for our home to be turned into a mini hospital with machines and endless supplies. But we did it. Again, running cranio ribbons was my saviour at the time, supporting other families helped take my mind off everything I was going through. I found comfort in helping others. 2 days before Christmas, we were allowed to go home.
After Christmas we had to go back for a checkup and sadly it showed Archie’s airway wasn’t healing as expected so the tracheostomy was to stay for the future we did know when or if it would be removed.
As time went on, Archie stabilized. I was making more friendships online through my page and Headlines. The feedback from them was they really wanted somewhere to chat that was closed, without having to worry if their Facebook friends see their posts. They also wanted somewhere that was just for parents and that’s how our parent only support group Cranio Ribbons UK Parents Support was created. I looked at other ways to raise money and started making taggie blankets without a sewing machine (back in day! 🤣) very soon I had raised over £3000 in aid of headlines. I wanted to reach out to more charities and organizations, so I continued fundraising. I also looked into becoming a registered charity but unfortunately was unable to as I was actively fundraising in aid of other charities. The way around it was to give up fundraising but I didn’t want to do that. I wanted to help as many as possible so I was happy to continue as a cause/organization.
When I wasn’t busy thinking of ways to expand Cranio Ribbons, I was thinking about Archie’s Craniosynostosis. At 3 years old, he still hadn’t had surgery. Finally, we decided we wanted a second opinion so went to John Radcliffe hospital. They said that Archie needed surgery and that he actually had multi fusion, Sagittal and Metopic Craniosynostosis. We didn’t hang around especially when they said, with him having a tracheostomy it was the safest airway he can have for surgery. There really was no question, we referred his cranio care to Oxford.
12 weeks later he was going into surgery. It didn’t seem real in a way, we had been waiting 2 and half years for this surgery but in an way it felt like we had already been through it because of all the families we had supported in the group.
Surgery went well, he had to have a blood transfusion in theatre and there was evidence of ICP but everything went to plan and he made an outstanding recovery!!! Within weeks of being home he learnt to ride a bike, jumping around on bouncy castles and even though he had a tracheostomy still amazingly his speech was improving. Oh, the relief to be on the other side.
One of my good friends across the seas in Ireland reached out to expand. This is where Cranio Ribbons Ireland was founded. Then shortly after a dad to a cranio child reached out with the idea of a dads only group.
Soon we got the news Archie’s airway was fully healed. Time to attempt the first operation and remove the tracheostomy. Surgery went well but sadly again we ran into the same issues as before with withdrawals, but he recovered quicker this time. 4 weeks later we were going home tracheostomy free!!!
While Archie was in ICU this time around, we finally got answers to his syndrome, 2 and half years after testing started. He had a very rare condition called Frontometphyseal Dysplasia. Only approx. 35 cases worldwide. Then I got the news that he had got the condition from me. I didn’t know I had a syndrome. How can this happen? This condition can affect males more than females when explained why I didn’t know but that didn’t stop me blaming myself. Took me a long time to stop blaming myself. We were also told we had high chance of having more children with the condition. We were devastated. This put our plans for more children up in the air. So, we pushed it aside and I focused on Archie and fundraising.
I expanded out to Twitter and created a grandparent only group Cranio Ribbons – Grandparents support and regional meet up groups so that families can connect locally. Cranio ribbons was going from strength to strength. I had to get help from other parents to help run things. And I’m forever in debt to all of them.
In 2017, 3 and half years of trying through IVF we welcomed our beautiful girl into the world who is cranio free and doesn’t have our syndrome. This is thanks to the amazing PGD IVF. Archie is an amazing brother and she idolizes him.
Having another child didn’t stop Cranio Ribbons growing even bigger. I started to do care packages for families in the UK facing surgery, I continued to fundraise and even expanded onto Instagram.
Archie has had a few more surgeries since and still faces more. He has had over 40 operations/ procedures on his legs, ankles, skull, ears, airway and tummy. He used to have feeding tubes in his tummy but is now tube free. He wears BAHA aids to hear and has to have his drinks thicken due to unsafe swallow and he struggles with mobility on longer distances and days out however now he has never been healthier, and this is the happiest he has ever been. We couldn’t be prouder of him.
My plans for the future for Cranio Ribbons is to continue with the care packages, continue to have amazing support groups and a have my amazing team behind me. I will also continue to fundraise in aid of other charities.
While I would love Cranio Ribbons to become a registered charity, I find it more important to be able to still do the things we want to do and still be able to fundraise in aid of other charities. To date I have supported 15 charities and organizations from my fundraising which to date is over £16,000.
Ps you can follow archie’s journey on u tube below