Elijah is the reason for this blog (and my reason for most things !) Born with Congenital Disorder of Glycosylation type 1A, Elijah is going to have some tough challenges ahead of him. This blog is all about him, our challenges we face with his condition and how we will overcome them all together. Elijah is my inspiration to be a better person, so this little space on the internet is dedicated to him and here is where you can learn a little bit about my beautiful boy.
Elijah T.C.B Hawkins was born via emergency c-section on 25th May 2017 after a long 23 hour labour. He was this puffy purple little blob, but to us, absolutely perfect.
24 hours after Elijah was born, he was taken into the NEO Natal unit at our hospital because he had caught an infection and required antibiotics. It was during his stay in the NEO Natal unit that we also discovered that Elijah suffered with abnormally low blood sugars – later to be diagnosed as the condition Congenital Hyperinsulinism. Elijah stayed in NEO for 13 days in total where he was given antibiotics and sugar water through an IV drip to stabilise his blood sugars levels.
When we took Elijah home, we settled well into a life as a family of 5. Our days were filled with filled with giggles, visiting family and friends who couldn’t get enough of this squishy little boy and family walks in the sunshine down at the nature reserve near where we live.
In September 2017, when Elijah was just over 3 months old, we had a hospital appointment booked to fast him for several hours to check that the low sugar problem he had when he was a newborn was no longer an issue. The idea behind his was that he would be able to hold his own sugar level above 3.4 even without eating for several hours which is what is deemed ‘normal’. Within the first hour of his fast, Eli’s sugar had dropped dramatically which is when the doctors knew we had a problem that he had ‘not grown out of’ and the fast was stopped immediately. Suddenly our half day fast in hospital had turned into a 4 day stay. Elijah got put on chlorothiazide and diazoxide medications within the day and the doctors worked tirelessly in order to pinpoint the correct dosages he needed in order to stabilise his sugars.
Elijah took his new medication routine well. He takes chlorothiazide twice daily and diazoxide three times daily which has stabilised his sugars to between 4.0 – 7.0. Due to Elijah’s Congenital Hyperinsulinism, Dr. B (our paediatrician) recommended that we book Elijah in for a MRI scan to ensure that during the months June – September there was no damage done to his brain due to his body failing to produce the sugar he needed. As the MRI scan was an recommendation, Dr B said that we didn’t have to do it but without hesitation we decided straight away that this was something we wanted doing for our baby. The unknown would be no use to us. We needed to know if there was any damage so we could put a plan in place if needed. Despite the seriousness of needing an MRI scan, naively, we remained positive. We were sure the MRI would show nothing. You only had to spend some time with Elijah to know that our little boy was ‘normal’. We were so confident that our boy was okay, stupidly, I agreed with Dr. B that he wouldn’t contact me unless something showed up on his MRI that needed attention – we were so positive that we decided that we didn’t want a phone call about the results unless actions needed to be taken as we had a scheduled appointment within the next two weeks anyway. We didn’t want to waste anyones time.
Two days after the MRI scan, I was out walking with Chubsy and Herbie when I missed a call from Dr. B’s office. My blood went cold. I couldn’t think straight. I physically felt sick. All I felt was dread. I knew something was up. I rang Liam straight away and babbled into the phone about Chubsy refusing to walk and Herbie misbehaving and told him he needed to come and pick them both up straight away. In reality, they weren’t being anymore mischievous that normal but because I had missed that phone call and had a voicemail asking me to call back ASAP, my mind completely stopped. When Liam came to pick the dogs up, I didn’t tell him about the missed call – like somehow telling him would make it seem more real. I just told him that I wanted to carry on with the walk by myself. I rang the office straight back and scheduled the next available appointment – 3 days from now. I never asked on the phone if it was good or bad news – it wasn’t something I could deal with right then. I walked home in a daze and told Liam about the call. The next 3 days were spent with anxiety and then hope, and then back to anxiety. I was so upset but I didn’t know what I was upset about. The unknown to me even now, is truly the worst thing.
On Monday 22nd January, at 10:30am we were sat in a hospital room with Dr. B. I was filled with dread, anxiety and panic, and then he said the most amazing thing – Elijah doesn’t have any brain damage. I was in shock. This was amazing. I felt elevated. This is the best news we could have hoped for. Why did he bring us in to give us good news ? We agreed only to a meeting if something needed addressing ? Surely, no brain damage was good, and didn’t need addressing ? I didn’t understand. It didn’t make sense. Then.. there was a but – a really hesitant but, like he didn’t want to burst our now estatic bubble. Dr. B pulled out Elijah’s MRI scan photo and said they had discovered something else and it wasn’t good – Elijah’s cerebellum hadn’t developed properly. It was too small. Elijah has Congenital Disorder of Glycosylation type 1A. There’s no cure and extremely rare. I couldn’t process the information. I didn’t understand. What is a cerebellum ? What does it do ? What did this diagnosis mean ? Is Elijah okay ? Will he survive ? Why my baby ? What went wrong during pregnancy ? Could we have prevented this ? My mind went into overdrive and I had a million questions, but I couldn’t speak. I couldn’t look Liam in the eye. I couldn’t look Dr. B in the eye. Suddenly, all my built up anxiety, all my fear, everything I had felt waiting for this appointment and this moment suddenly surfaced . I had erupted and I couldn’t stop crying. I couldn’t hear what was being said to me. I couldn’t focus on anything and I didn’t understand. I couldn’t work out what Dr. B was saying. I couldn’t work out what Liam was saying to me. All I could do was hold Elijah and cry.
Dr. B left me and Liam to have some time to think of any questions and gave us the opportunity to process the information he had just given us. I somehow found the courage to look up at Liam. He was devastated. Tears were streaming down his face too. How had his boy been so unlucky ? How could we be so unlucky ? Why us ? Dr. B came back in after a few moments and that’s when all my questions started shooting out like bullets. Will he walk ? Will he go to a mainstream school ? How can we make him better ? Will he be okay ? How behind will he be ? Why him ? Why did this happen ? Why wasn’t it picked up before ? Before Dr. B even had a chance to answer my question another shot out. Then Dr. B said something brutally honest. We don’t know what kind of future or life Elijah will have. Unfortunately, it’s all unknown, and only time will tell us anything. We have to take it one day at a time. I was devastated. Heartbroken. Angry. I felt betrayed by my own body for not growing Elijah properly. I felt angry at the nurses who did our scans – how could they miss this ? I felt angry at the doctors. Why didn’t you notice this earlier ? The reality is, it’s no ones fault. I couldn’t have done anymore during pregnancy to make sure that Elijah would be born anything but perfect. Every nurse and every doctor we had met during pregnancy, during labour and during Elijah’s first days in hospital as a newborn had been amazing. The NHS are a credit to our country. That didn’t stop the anger though, I just wanted an answer. Someone, something, to blame. But Dr. B was right. We have to take it one day at a time. And that is exactly what we have done.
Elijah is the happiest, most cheeky, sweet little boy I have ever met – I am biased I know. Despite the hard start that he has had in his short life so far, this boy is always full of beans. He is full of cheeky grins and huge smiles for anyone who pays him any attention. Elijah’s days are filled with hospital appointments, blood tests, physio, meetings and medication and every single day he is full of charm and giggles. Nothing gets this boy down. Every single day we are so incredibly proud of Elijah. Every achievement he makes, every bit of effort he puts into his physio despite it being physically draining for him is honestly amazing. Every time Elijah manages to learn something new, no matter how small fills us with the most unbelievable pride and joy. I’ve never had tears of joy before until Elijah came along and now I have them almost weekly. Our CDG son is amazing in every single way and we couldn’t be prouder of him every single day. Elijah’s journey is just beginning – it’s going to be hard, testing, physically and emotionally draining, filled with some really difficult times, but if anyone can do it, it’s Elijah.
This is Elijah’s journey. I’m just here for the ride.
To Infinity & Beyond 