Jye’s Story about Discovering His Haemophilia A Chronic Bleeding Disorder

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Discovering Jye had heamophlia

Our son Jye was about a year and a half old when we decided he needed a set of table and chairs all of his own. A place where he could exercise his independence in eating, drawing and generally making huge messes.

His eyes lit up when Daddy brought home a small table and a pair of stools and, after some quick assembling (with dad’s help), Jye got to work right away and made himself acquainted with the new addition.  

 

Little did we know that this “new addition” to his play space would soon reveal to us something about our son that we had never imagined possible…. something that absolutely shook our world.

Jye's story

Jye is your typical, energetic little boy who loves running around at the park, doing flips on the bed and jumping off the couch. As he began to walk, he sported many bumps and bruises. “It’s part and parcel of being a toddler” we thought, and always encouraged him to “get up” after a fall or “keep going” after a stumble.

 

It wasn’t until, one afternoon in July 2014, when a chain of events were to change the course of our lives forever.

 

As Jye went to have a seat at his table, the chair gave way and he fell flat on his face. There were lots of tears and, apart from a bit of blood pooling in his mouth and a fat lip, there didn’t seem to be much else wrong. We tried ice packs and icy poles. After a while the bleeding seemed to subside, and we managed to pinpoint a wound on his gum near his front teeth.

 

For the rest of the evening the bleeding came and went. We tried, to no avail, enticing him with lots of icy cold goodies from the freezer. We wondered why the bleeding hadn’t stopped yet.

 

For the next day or two, the bleeding seemed to subside. There were occasional bleeds, but only minor, so we thought it was part of the natural healing process. We figured the mouth was a tricky place for wounds to heal anyway. Every time we had a little sneaky peek at his gum, we could barely see where the blood was coming from.

 

In the early morning of day three, we woke up to a very unsettled little boy. I went in to check on him, keeping the lights off as not to stimulate him too much. Jye’s pyjamas and pillow felt damp. I immediately thought he was feeling unwell and had perhaps vomited. I switched on the light and was horrified at the scene. There was blood everywhere and seeping out of his mouth. I cleaned him up as best as I could, dressed him in clean clothes and brought him into our bed. “I’ll deal with the blood-stained sheets in the morning, and, oh, I better give him a dose of Nurofen”. In hindsight I don’t know why I felt the need to give him Nurofen. I guess when you see that much blood and your child is screaming and it’s three o’clock in the morning, you feel like that’s the only logical solution. Plus, it was the only medication Jye would stomach.

 

That day, I took Jye to the medical centre. “Maybe he needed stitches?” The bleeding had subsided at this point, so by the time we got called upon by the doctor, Jye was jumping around, laughing and carrying on. The doctor must have thought I was mad! I tried to explain the bleeding was worse at night but Jye wasn’t putting on a very convincing performance! The doctor examined him and said he had torn his frenulum, the piece of skin between the lip and gum. He said the tear was so tiny that it wouldn’t warrant a stitch. The doctor advised me to use compression over the lip and if he was still bleeding in a few days to bring him back for a reassessment.

 

As the events of the night before faded away into the distance, I began to feel like I was overreacting. We carried on with our day. I’d find the odd trail of blood where Jye had been. “Surely the bleeding would stop soon?”

That night was a repeat of the night before. Not much sleep was had. We tried to keep him comfortable by mopping away the blood from his mouth as he slept. Blood would trickle down his chin and cheeks. We would wake to the sounds of coughing and gurgling blood. And of course, I’d administer another dose of Nurofen, because I didn’t know what else to do. That morning, all three of us covered in blood, I decided to take him to the local hospital. Again, by the time we arrived, Jye was as jovial as ever, barely showing any signs of a bleed. I felt like I was losing my mind. “Am I imagining this?”

 

Once again after observation, I was told to apply regular pressure to the site and give him plenty of icy poles. (This advice was starting to frustrate me!) Clearly applying pressure to a squirming toddler’s mouth was no easy feat. “Does he need stitches?” I prompted. “Not at all. It’s a tiny little tear.” The doctor smiled at me sympathetically but deep down i knew she was thinking… “Here’s another hypochondriac mother.”

 

The night that followed was another long and desperate one. And once again I fed him Nurofen. At the crack of dawn, I sat in bed, watching Jye sleep, wiping away the blood that flowed steadily from the corners of his mouth. I remember feeling so helpless, crying. I had an important day scheduled at work the next day. I was feeling stressed about that too. “He definitely needs stitches!!!” I’m taking him to the dentist as soon as I finish work today. They’ll surely stitch him up!” I didn’t know what else to do, so I reached for my phone and took a few photos of Jye sleeping amidst what looked like a murder scene.

 

I called the paediatric dentist and asked if they could see my son. “It’s urgent. I think he needs stitches.” But to my dismay they were fully booked. “So what should I do?” I was becoming increasingly agitated. The nurse sensed my frustration and suggested that we go to the children’s hospital. “They have a dentist there if it’s an emergency.” I didn’t realise it at the time, but that was definitely the best advice we received so far.

When I arrived at the emergency department of Randwick Children’s Hospital I was greeted by a sea of friendly administration and nursing staff. Jye, right on cue, stops bleeding and plays energetically with every single toy in the waiting room. Again, the nurses wonder what I am even doing there. I couldn’t bear the thought of being sent home again with no answers. So I quickly retrieved the photos I had taken in the morning of Jye sleeping, covered in blood. The nurses were horrified. They quickly checked his vitals and he was sent inside. In between seeing doctors and getting blood tests done, we waited.. for hours. I was so positively sure that they were going to suture him up and send us on our merry way home.

 

I was asked on numerous occasions if I was a heavy bleeder. “No, I don’t believe so.” I honestly didn’t know where this was going. The doctor called us in and said that the blood tests had detected a deficiency. “We need to keep Jye in for further testing”. Panic set in. I was still in my work gear. I hadn’t planned for an overnight stay in hospital. “What about stitches?” But I knew at that point there was an underlying issue. “What could possibly be wrong?” In one and a half years Jye always looked and behaved like a “normal” kid.

 

The night was a blur. We were wheeled to the ward in the middle of the night. Our beautiful boy was coping so much better than I was. I remember feeling utterly confused, coupled with complete helplessness.

 

Night turned into day and we anxiously waited for some answers. After what felt like an eternity, a team of doctors and nurses asked to have a word with us. This moment was completely surreal. We were escorted to an empty room and asked to “have a seat”. That’s never a good thing. “Your son’s blood results have shown that he only has 3% clotting factor VIII present in his blood… this means his blood has trouble clotting when he has a bleed… Your son has a blood disorder known as Haemophilia A.” I’m sure there were other explanations in between. But that’s all I remember. We felt numb. We felt as if the world had suddenly stopped spinning.

 

Needless to say, hours turned into days, and days turned into weeks and slowly life went back to some sort of normality. Disbelief and denial gave way to acceptance, anger transformed into gratitude and grief fueled the desire to learn everything we could about Haemophilia and what it meant for our family and for Jye’s future. I also learnt to never, ever administer Nurofen to my son again!

 

We are now in a place where we feel so thankful for what we have. Jye is being cared for by an amazing team of doctors and nurses. Our visits to hospital have always been positive experiences and we are truly lucky to be living in a country that supports us so much, with factor treatment readily available.

 

However, there is still no cure. And, unfortunately, some haemophiliacs are not responding to the treatment as well as others. Over time, inhibitors can develop in the body, essentially making the factor treatment ineffective. Please take the time to read Jayden’s story, as it sheds much needed light on the difficulties faced by people with bleeding disorders.

 

We hope and pray that Jye continues to respond well to his factor treatment as he develops and grows. We know that there will be challenges along the way, but for now, we can’t help smiling every time Jye tells people that he has “special blood”.

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