Hi I’m Sarah, mum to our beautiful baby boy, Brodie Jaxson. Brodie was born on the 20th March 2012 weighing a healthy 9.1pounds. Brodie, my husband Damien and I live in Melbourne, Victoria with our 2 Dalmatian dogs Reilly and Chester.
My brother Nick has an immune deficiency called Hyper IgM Syndrome. He was diagnosed at 5 months and begun immunoglobulin intravenous treatment.
As Nick’s immune deficiency is hereditary, when I was pregnant we were told that the cord blood of our baby could be collected, stored and possibly used in the years to come for future siblings that may be affected by the immune deficiency. Damien and I made an appointment at the Royal Children’s Hospital. After a few meetings with specialists, cord blood collection was organised and we were sent on our way with a pack to take with us when it was time to have our baby.
Brodie had his first blood test at The Royal Children’s Hospital at 5 weeks old. It was overwhelming for Damien and I to watch but we needed to stay strong for our brave little man. Later that night we received the devastating news that with an early detection test, Brodie has a 90% chance of having Hyper IgM Syndrome. The gene test results would take a further 2 ½ weeks.
With a positive gene test result, Brodie began his first immunoglobulin intravenous treatment at 8 weeks old. Brodie’s first treatment was very hard on everyone including the hospital staff. Watching somebody so little endure what he did, was truly heart breaking. I remember the lady sitting opposite us in the Day Medical Unit with her older son say as they were leaving “I hope your gorgeous boy gets better soon, no one that small should be sick!” It felt like taking a bullet… Knowing that we would be there every 4 weeks for possibly the rest of his life.
One of our biggest fears was that because he was so little and couldn’t understand why he was there, was that he would start to think that we were hurting him on purpose.
Damien and I were very lucky to have my mum come to every infusion for support, words of encouragement, to share personal experiences, be a food runner and simply for extra company.
Brodie continued to have immunoglobulin every 4 weeks. Each time it became harder and harder to find a vein resulting in multiple attempts in his hands and feet. At almost 7 ½ months, we had a horrific day with a total of 9 attempts/holes in our babies tiny body. Even the doctor from ICU struggled but eventually was successful. Our immunologist was contacted and an appointment was made for the following week to discuss an alternative strategy as intravenous was becoming much too traumatic.
A subcutaneous injection was decided as the best option and Brodie would start the following week. Damien and myself were trained over 3 hospital sessions (1 per week) in which we administered each infusion with the help of our immunologist nurse.
We begun Brodie’s subcut infusions by using a Springfusor30 paired with controlled flow tubing as there was no NikiT 34 machines currently available. As Brodie was just under 10kgs, we first began administering 5ml in 2 sites in his tummy. We wanted to take it slowly to see how his body would react and how quickly he would absorb the immunoglobulin. What an improvement this was!! Being able to use Angel/Emla cream 40mins prior to the infusion was a godsend and Brodie was unable to feel the needle go in or when we took it out. I laid down on the bed with Brodie happily lying on my tummy oblivious to what was happening. I remember looking at my hubby and letting out a huge sigh and a tear of relief.
As his tummy only took a few hours to absorb the medicine, the following week we decided on 1 site, 10mls in 45mins. We continued to use the Springfusor30 for about 4-5 weeks until a NikiT34 machine became available.
There have been a few hiccups along the way but nothing in comparison to intravenous. We are so grateful that we have access to this life changing treatment!
My brother has had Hyper IgM for 27years now. He is healthy, strong and a fantastic example for our son. Nick and Brodie share a special bond that will be made official on March 24th 2013 at Brodie’s Naming Day as Nick is named Godfather.
When the time comes, we will make the decision as a family whether we will proceed with a bone marrow transplant. But for now, Brodie is currently 11months of age and is a thriving toddler! Crawling at 6 ½ months and walking at 9months. Being immune deficient certainly hasn’t slowed him down and he will continue to surprise us and make us extremely proud each and every single day. He has a very special aura around him and he has the ability to brighten anyone’s day instantly.
The Royal Children’s Hospital has been amazing through this whole process. The new hospital is beautiful, fresh and has been made perfectly for the children (visiting the meerkats is a favourite). The staff are unbelievably supportive and extremely quick to respond to any messages left.
Being apart of the Immune Deficiency Foundation of Australia facebook page has been amazing. As Hyper IgM Syndrome is very rare, it was fantastic to find other mums with boys of a similar age with the same condition. Having such a page to connect with others alike makes you not feel so alone with such an isolated illness. It is an outlet to talk to other people who understand what your life is like on a daily basis. I am very thankful for the support I have received so far and grateful for the people I have connected with.