Hello everyone!

I must begin by saying that my Mom, Dad and I are overwhelmed by all the warm wishes, prayers and good energy that everyone from across the world is sending to all of us. The kindness of each message brings tears to my Mom & Dad’s eyes. You are all incredible and a brilliant assembly of support for all of us.

The weekend for me was a quiet one, with me going into the neo-natal unit late on Friday evening. The staff there are brilliant and they treat me with such care and tenderness. My Mom and Dad regularly come to visit me, with Mom always proud to present a little bottle of Mom’s milk to feed me, even though it is through a tube. Through her resourcefulness she’s managed to get Dad to hire a double-breasted industrial breast-pump to express milk at unprecedented rates! My parents are being unbelievably strong and positive, but I can see from their eyes and their shaky voices that they have been crying alot.

On Monday my Mom and Dad went to see a specialist in Pretoria at Unitas Hospital called Dr Pieter Fourie who is an intervention-radiologist. I’m so proud of my Mom being able to travel all that way after undergoing major surgery. The intervention-radiologist is a really nice and compassionate man, and even though he had just come out of surgery he took the time to have long meeting with my Mom and Dad, donned in his theatre scrubs, only pausing to take off the heavy lead apron that protects him from radiation emitted by the scanner during the delicate procedures he performs on a daily basis. He described in detail the next steps to be taken and the procedure to fix my little problem.

Basically I have been diagnosed with chordial arteriovenous malformation (AVM) in my head, which means that there are multiple thistles, making the operation a little more complicated. The way to repair this is by sending tiny little wires and cables up my artery from my groin until it reaches my head where a special glue (Dr Fourie called in super glue) is used to close the thistles and fissures in the veins and arteries. He believes there are only two major fissures that he needs to close off to have the desired effect.

Although the above procedure sounds pretty routine and uncomplicated, there are other factors to consider, and that is my health and ability to be operated on. For me to be in optimum condition to be operated on my heart, lungs and kidneys must be strong. The reason is simply that my little heart is already under strain given the enormous pressure being exerted on it from the blood that my heart sends out coming back at almost the same pressure. Secondly, my lungs will need to continue supplying my little body with the necessary oxygen I will need to live. Lastly, the kidney function is import to flush out the dye that is pumped into me during the operation so that the doctors can see the contrast where they are in my veins and arteries on the screen that they watch during the operation.

The complication then is to do the operation earlier or later? There are benefits to both, and some tests will determine the best course of action.

If left too late, the veins start to harden as the pressure of the blood rushing back to the heart is too high for them to handle. To compensate for this my little veins build a type of callous on the inner walls of the veins to strengthen them. The downside of this is that the veins’ circumference becomes less and subsequently increases the blood pressure once again. With the increase in the blood pressure, the little veins once again feel they’re unable to cope, so they build up even more callous material on the inside of the veins. The net effect is a Catch 22 situation.

If done too early, my little kidneys, lungs and heart may not be strong enough to cope with the trauma of an operation of this nature. The biggest test right now is also to determine if my little brain is functioning correctly, given that it may not be getting enough oxygen, because of the fissures and thistles in my arteries. If the brain activity is normal, we can delay the procedure to allow my little body to become strong enough to be operated on. To determine this, I’m going for an MR Scan today to check out my brain activity which will determine my next steps.

My paediatrician, Dr Nicoletta Hay, has been wonderful. It was thanks to her that this abnormality was diagnosed. She is so keen to help that she has already spoken to Dr Fourie and will go to a medical meeting at 7:30 on Wednesday morning, to meet the full team of surgeons that will be present during my operation. The team will have to include a super-duper paediatric-cardiologist and a paediatric-neurologist. The team at Unitas does comprise a paediatric-neurologist, but not a paediatric-cardiologist, so Dad will arrange with a paediatric-cardiologist from Sunninghill to be in attendance during the surgery. Dr Hay has been requested to be the lead on the clinical team, as Dr Fourie is the specialist on the intervention-radiology side, but not necessarily on the cardiology, neurology and paediatrics.

To top it all off, I had pulmonary failure in the early hours of this morning. Fortunately with the genes of my strong parents I too am a fighter, and after the doctors toiled with me for almost 2½ hours I finally pulled through. My Mom and Dad were contacted at 5:09am this morning to be given this news. I’m really impressed with my Dad that he actually woke up, as both Mom and Dad each took a rohypnol (aka ruffies) that was prescribed for them to get some rest.

During the course of the morning Mom and Dad came to see me again, Mom proudly bringing me the little bottle of nutritious milk. Alas I cannot eat anything at the moment, so the milk went into the freezer at ICU for latter use. Dr Hay met with my folks this morning as well, and said that if I’m stable enough, I would still go through with the MR Scan this afternoon; my recovery from this morning has been quite remarkable. She confirmed that despite my little setback in the early hours of this morning she would still go through to Unitas tomorrow morning for the meeting about my operation. Through their tears I could hear my Mom and Dad’s infinite gratitude to her for continuing to follow through on fixing me up!


Bye for now,

Jarrod J


PS – For a video clip of my brain scan, click here (file is 8mb).

Figure 1 My Mom giving me a cuddle in the neo-natal unit – the staff are really kind to let my Mom & Dad hold me for a few minutes during each visit

Figure 2 At the risk of looking “uncool” for my photos, here I am donning a pair of shades to protect my eyes while I get some phototherapy to treat a bit of jaundice that I picked up

Figure 3 The yellow shaded areas show my veins and arteries – its clear from this scan that there is definitely some enlargement of the vessels

Figure 4 Frontal view of my skull

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4 Comments on I’m 5 (days old) today!

  1. Claire says:

    You’re being a very brave little man, Jarrod. I know that your Mom and Dad will be very proud of you and that they are finding this all very difficult. They have a really great support base, though, and all their friends and family are praying for your little family right now.

  2. Oliver says:

    Norwin and Lynn
    Thanks for keeping up the detailed dialogue. It helps take away some of the medical mysteries and you certainly answer questions long before we even think to ask them.

    All I can say at this time is know that you have a wealth of love and support from around the world in the form of prayers and thoughts for Jarrod’s well-being. It is so nice to see the pictures of him – actually he looks really cool in his shades.

    We will all be thinking of you as the medical team decides on the next steps. It really is amazing what they can accomplish these days. We’ll keep our fingers crossed that they can proceed with the operation so that Jarrod can start his road to recovey soon. Keep your strength up – your fortitude and confidence is truly awe-inspiring.

    With love and lots of prayers

  3. Tracey Allan and Family says:

    Hi Guys

    We know that Baby Jarrod is strong enough to get through all of this with great support and wlll of his parents, family and friends. You are deeply in our thoughts and prayers.

    Take care and God Bless

    Tracey & Family

  4. Joleen & James says:

    Hi there,

    Thank you for the updates. It is good to be updated by you guys and our hearts goes out to you both. You have been remarkably strong and we are so proud of both of you!

    Jarrod is such a brave little boy and we are sending him, and to you both lots and lots of positive energy. You are in our prayers and thoughts!

    Lots of love
    Jo & James

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