Our little Warrior Boy- Henry

Hi everyone,

My name is Karina, and I am the blessed godmother of Henry- the most beautiful 18-month-old little boy who has endured so much in his short life. Henry was born in August 2022 blessing his parents Mel and Craig with a second son, a little brother for Lachlan who will be 3 in May. Life is tough for everyone especially in this current financial climate and we are all strapped but if by any chance you have a few dollars to spare Mel and Craig would be so incredibly grateful. Please feel free to share this page- every little bit helps.

This post won’t be short but please stay with me until the end, it’s just a snippet of what’s been going on for this beautiful family and our warrior boy Henry.

Henry was born with Sensorineural Profound Hearing Loss at birth and was fitted for hearing aids in the October but we soon realised they weren’t going to be enough to give Henry clarity of hearing. It was decided after a lot of testing and multiple trips to Melbourne that he needed a Cochlear Implant. During this time Henry fell sick with a common rhinovirus (cold) which escalated quickly resulting in him going into kidney failure and transported via air ambulance in an induced coma to the RCH Paediatric Intensive Care Unit at only 8 months old. There Henry was diagnosed with Atypical Haemolytic Uremic Syndrome (aHUS) a blood clotting disorder which breaks down his blood cells prior to them reaching where they need to be. Henry was lucky to avoid dialysis however still required fortnightly infusions in Melbourne (4 hours from home) for 6 months until he was approved on compassionate grounds for monthly infusions. This diagnosis meant that Mel was no longer able to work to help support her family financially as she became Henry’s full time carer.

Henry has also required regular trips to Melbourne on top of his fortnightly/monthly infusions for appointments at the Royal Eye and Ear Hospital in preparation for his Cochlear Implant surgery. Henry was sent for genetic testing and Mel and Craig found out his deafness was genetic- an X Linked Stapes Gusher Syndrome. This information prepared them for his cochlear implant surgery with the knowledge that he would have a gusher phenomenon due to the malformation of his cochlear. Mel and Craig had multiple meetings with the surgeons, and it was discussed that it would be fixed during surgery with an unlikely chance of a leak post surgery.

Mel and Craig prepared for a 3 night stay in Melbourne- 1 night for Henry’s infusion, surgery day and post up follow up and kidney clinic the next day before returning home to Glenellen the next day.

24/1/24- Cochlear Implant Surgery Day:

Henry’s Surgery took 5 hours. Mel and Craig had a meeting with the ENT surgeon following the surgery and he described Henry’s cochlear as being one of the most interesting and challenging ears he has worked on- which says a lot considering he has operated on over 1200 cochlear implants globally. He said Henry had a large leak during surgery, but they packed it as well as they could and discharge was still set for the next day!

Day 2:

Henry was not back to baseline mobility, so they agreed it was best to keep him in for one more night for observation. That night Henry began to leak a clear fluid from his left nostril (the side he was operated on). We had to collect the fluid for testing which was extremely difficult as it came out quickly and was like water. Henry began to show signs of distress also with head banging and irritation. Fluid testing came back positive for a Cerebrospinal Fluid leak from Henry’s nose which meant a 2nd surgery.

30/1/24- 2nd Surgery:

Henry began having high fevers and vomiting, his forehead was very swollen from the fluid and pressure in his skull. Infectious Diseases became involved, and he was put on a high dose of IV antibiotics. Neurosurgeons also showed up and explained there was a small possibility that they would need to put in a lumbar drain to relieve the pressure- consent forms were signed just incase. 5 and a half hours went by with semi regular updates when the neurosurgeon rang explaining that they needed to put in the lumbar drain and Henry would need to be sedated with medication for a few days to stop him from moving. Mel and Craig met with the ENT surgeon at 1am who explained he had packed the leak and put a graft over it. The drain would need to be in for 5 days to relieve as much cranial pressure and drain the CSF. Henry was given a 1:1 nurse as his drain needed to be constantly monitored. If this does not work the next step is to seal off the middle ear completely which also came with the news that the cochlear implant may not even take leaving Henry with no possibility for hearing on his left side at all.

Since the 2nd surgery Henry has had to undergo another 3 emergency procedures under sedation due to the drain coming apart or leaking. As you can imagine this has been extremely confronting and overwhelming for Henry and his parents, seeing their child in so much pain with so many unknowns, feeling completely helpless, away from family and friends but most importantly their eldest son Lachlan.

5/2/24:

Tomorrow a meeting with all of Henry’s surgeons and specialists will take place to work out a plan moving forward. They may give the okay to clamp the drain and wait 24-48hrs for any signs of the CSF leak reappearing or any pressure on his head/irritation- if there is no more leak then IV antibiotics will continue for 10 days due to how many days Henry has required the drain and having his head opened twice. If they can not clamp the drain another plan will be made. Please cross your fingers for positive news tomorrow.

As you can imagine this has completely ruined Mel and Craig emotionally but also financially with Craig needing to take time off work and not being able to work the overtime he usually does to support his family. The multiple trips to Melbourne, petrol, accommodation, parking and food to name a few. IPTAAS is available to Mel and Craig however reimbursements are taking up to 10 weeks to go through. Craig has had to return home to work although he can only work half days as he needs to care for Lachlan.

“Emotionally, I’m done, it’s so hard to sit and watch Henry in pain or sedated. I miss Lachlan and I just want to be home in our family unit or atleast be able to give Lachlan a hug but we can’t even afford for Craig and Lachlan to come down. I’ve had a $600 bill this week and I’m living off Afterpay to be able to eat”. Mel- Henry’s mum.

If you have stuck with me until now THANK YOU!!!

Thank you in advance to anyone and everyone that shares this page or donates. You have no idea the impact you will have on Mel, Craig and their beautiful boys Lachlan and Henry. Please keep Henry in your prayers and thoughts, we need all the positive vibes to get not only Henry but his family through this very difficult time.

Thanks again,

Karina x