“Your boy is sick”…the words rolled of his tongue in a fashion that was hard as stone. No emotion. “There is not a lot we can do for him at this time,” he said. “But we have to do something” I cried out-“his head is swelling, his heart rate is dropping; there has to be something that can be done.” 

I will never forget the first conversation I had with Malachi’s neurosurgeon.  Malachi’s outlook was grim and his quality of life seemed bleak. “My baby doesn’t deserve this,” I would cry out. 

But death did not have a hold on Malachi. He would live, and his life would be meaningful. Hydrocephalus will not define Malachi.  Malachi is more than a conqueror through Jesus Christ! 

September is Hydrocephalus Awareness month. 

Malachi developed hydrocephalus after he developed a grade 4 brain bleed from being born prematurely. The impact of labor was too much for the tiny vessels in his brain, and the blood “clogged” his ventricles, not allowing cerebral spinal fluid to drain out to the spine as it should. Hydrocephalus is a disease that has NO CURE. The only treatment for hydrocephalus is risky and invasive brain surgery.
 In fact over 1 million people, young and old are living with hydrocephalus. However, even after 50 years, we are nowhere near a cure, let alone a less invasive treatment option. 
Research is essential. At the very least we need treatment options that have more positive and long term outcomes. As well as diagnostic tools that are noninvasive and cost effective. Our shunted heroes deserve a cure!

Malachi’s VP shunt has allowed him to defy so many predictions that were made over his life…all because it allows his cerebral spinal fluid to drain away from his delicate brain tissue, and into his abdominal cavity. This allows his beautiful brain to grow, and not be compressed from rising CSF levels.

When Malachi was too little to get a shunt, he had a reservoir placed (brain surgery). This reservoir served as a device where a needle could be inserted and spinal fluid could be drained. Malachi had 10-20 mls of fluid drained every day. We were so thankful for the reservoir. Although it was not perfect by any means-infection risks, pain from the needle, and bradycardia episodes after taps-it was much better than the alternative.  

Before Malachi had his reservoir placed (the surgeon would not perform the surgery until he was 800 grams), he would have taps with a large needle that drained directly through his skin and down into his ventricle through the soft spot on his head. This could not be done daily-first of all because it went much deeper in the brain and was risky, and secondly because of the added risk of infection. Therefore, Malachi would have his head drained every 3-4 days. 

While we waited, Malachi’s head would swell. It was awful. He was in pain from the spinal fluid compressing his brain tissue, and there was nothing I could do but sit with him, and stare through plexiglass walls.  I couldn’t even hold him because when we tried, his heart rate would drop and his oxygen levels would fall dangerously low. His hydrocephalus effected every part of him. It was hard to watch…his head enlarged, his fontanelle bulging, and his little eyes sunken in.  It was heartbreaking. 
 

Now I look at my smiling 8 month old boy, and grin from ear to ear. He has been through so many things in his short life; yet, he is the most joyful child I know.  He loves bath time, watching himself in the mirror, and rocking in the rocking chair. He loves when mommy sings to him, and when daddy tickles his belly. He is vibrant, determined, and energetic. I love my shunted hero! 

Things are different now. We still have fears and uncertainty, but it doesn’t feel as “life or death” as it once did.  However, if I said it was easy I would be lying.  You never know what the next day will bring. While Malachi’s reflux has improved (praise God!) he still is only eating in his sleep (I know it sounds crazy…but it’s more common then you may think). G-tube placement surgery is scheduled for October 6th.

  We never thought Malachi would need a G-tube. But, I have tried everything in my might to keep him from getting to this point, and my efforts are still not enough. Malachi lost weight this week; and we need optimal nutrition to nourish his growing brain. We don’t want to look back on life and wonder “if he had the nutrition he needed, would he have flourished?” Therefore; we embark on a road to G-tube placement. 

 While we dread the surgery and the possible complications that could arise, I know in my heart that this is what Malachi needs to supplement his oral feeds. Malachi runs this show, not I.  And while I fight daily to protect him, there are some things that are out of my control.  I give this to you Lord-it’s out of my hands. 

“The LORD says, “I will guide you along the best pathway for your life. I will advise you and watch over you.”‭‭ Psalms‬ ‭32:8‬ ‭NLT‬

Unless a miracle occurs (which of course we know is possible!), Malachi will be having surgery. Will you please join with us in prayer now? Prayer for healing of Malachi. Prayer for protection as we travel to and from Durham weekly. Prayer for this upcoming surgery-that it will be void of complications, and that he will not suffer in pain. And as always, please pray for his brain and shunt functioning.  

As mentioned earlier-the only treatment for hydrocephalus is brain surgery. 50% of shunts fail within the first 18 months. We are always praying that Malachi’s shunt will continue to function as it should, and that ultimately one day he will not even need it.  

Thank you for following our journey. For praying with us, and standing by our side. Take a moment out of your busy day, and remember those suffering with hydrocephalus. It’s not a disease that is talked about often, but for those who have it-it effects their entire world.