Looking Down the Roller Coaster

You know that saying, ‘life is a roller coaster’? There’s no denying it’s true, but I’ve got to admit that nothing has caused it to feel more accurate than watching my baby son go through frequent medical ups and downs while I am powerless to stop it. Sure, life is never perfect, but compared to these last few months I feel like much of life has been more of a gradual trek up and down various hills and valleys rather than a white knuckle ride with danger around every corner. Those who have been tracking with my recent posts will have read about our family’s journey through my infant son’s initial diagnosis in the womb with a severe brain bleed and resulting hydrocephalus (extra fluid build up in the brain causing potentially dangerous pressure increases with many and varied possible outcomes, both short and long term) and our joyful relief tinged with some ongoing trepidation about the future when we were able to bring him home from the hospital, continuing to pray for healing as we sought to ‘ask boldly and surrender completely’. Now, two and a half months down the track, it’s time for an update.

The Latest…

We’ve been in and out of hospital a lot. So… many… appointments. Cranial ultrasounds, weekly or fortnightly neurosurgery clinic meetings (depending on how things are going), physiotherapist check ups, ophthalmology, audiology…

We were hugely relieved to learn that his hearing is normal on both sides and that his optic nerve is not swollen. Aside from having these tests done, the first two or three weeks after leaving the hospital were spent doing the normal settling in routine with a new baby, well, as ‘normal’ as possible. For a little while the head circumference was fairly stable, but then it started to increase, meaning the cerebrospinal fluid (CSF) was still building in his brain due to a blockage somewhere. We were told of three options:

  • a ventriculoperitoneal shunt which drains fluid constantly and permanently from the rear of the brain down the neck via catheter tubing and into the abdomen
  • a ventricular reservoir which allows neurosurgeons to remove fluid a number of times over a period of weeks and/or months via insertion of a needle into a device under the skin which is connected to the ventricles in the brain (where the fluid is produced) in such a way that fluid flows freely in and out of it all the time
  • an endoscopic third ventriculostomy which is a procedure not yet safe to perform due to his young age, but which is designed to allow fluid to drain through a small hole inserted in the base of the brain, reducing or eliminating the reliance on a shunt.

Straight up we were told that 40% of shunts fail within the first year and 50% fail within the first two years. They can calcify and snap, become disconnected, infected or blocked, and they can malfunction in terms of flow rate, from what I understand. Needless to say, we were keen to avoid this option due to the many ongoing complications that often arise and require further surgery, sometimes frequently. The neurosurgeons were keen to avoid this too, so on 13 July they inserted a ventricular reservoir to try to buy some time and see if the fluid would be able to flow normally once the blood from the bleed cleared up.

They took 14mL of fluid on the day of insertion and for a couple of weeks his head circumference followed the normal growth curve which was a real answer to prayer, as was the fact that God had brought our son safely through the surgery. Right then, as was the case when we brought him home from hospital for the first time,  we were riding happily along the top of the roller coaster. A couple of weeks later though, the fluid was increasing again. The roller coaster turned downward. More hospital visits followed including another reservoir tap (to drain fluid) and several hours of close monitoring. For a couple more weeks it was stable, but all the while there has been underlying tension as we monitor things like fontanelle softness and irritability. You know what though? Babies get irritable… but in this case, when the irritability didn’t pass in a few hours we started wondering if the pressure was causing him pain. That brings us to a couple of weeks ago when our neurosurgeon was on holidays. The surgeon we saw in her place took a look at his latest ultrasound and said he needed a shunt. After a number of weeks of things looking up, we felt like we had been riding the top of the roller coaster again and all of a sudden, we were looking down somewhat unexpectedly.

I began to wonder why this was happening this way. I wondered if my prayers had been lacking or if God in his infinite goodness and wisdom was just answering them differently to how I’d hoped and imagined through the lens of my limited perspective. I knew it must be the latter, but sometimes the truths you know take a while to overpower the emotions you’re feeling, which can change like the wind. Uneasy, I called the hospital and asked if we could try the reservoir one more time. They agreed it was reasonable to give it a go, and so we did. Three hospital visits in as many days. Three hours in hospital for close post-op monitoring. Then as we were about to leave my wife Chantelle discovered swelling around the reservoir. The two likely causes were CSF infection, which can be highly dangerous, or leakage of fluid under the skin. After a tense hour or two, it was diagnosed as a leak from the reservoir and pressure bandages were applied. Try keeping those on a wriggling baby with a smooth round head for a full week! Needless to say – a couple of days later they fell off, but the swelling was gone, praise God!

That brings us to now. At this week’s appointment, we were hoping and praying our son’s head circumference would be following the normal growth curve again as it was after the most recent reservoir tap, but unfortunately that wasn’t the case. He was pulling further away from the top percentile of the ‘normal’ range. So… the shunt is before us once again, and this time it’s the plan, not just one of the ‘options’.

Don’t get me wrong – a shunt is not the end of the world. It is an amazing device that literally saves countless lives from a condition that used to be a death sentence, but since it also carries many known failings, signing the consent form for shunt surgery in an infant sort of feels like potentially signing your child up for a lifetime of extra surgeries. This is especially true since the doctors say failure is essentially a matter of ‘when’, not ‘if’.

Present in the Valley

As we look down the roller coaster again, this time with surgery booked in just a couple of days from the time of writing, I find myself focusing not only on the downward slope immediately in front of us, but trying to fix my eyes on the fact that the roller coaster doesn’t go down forever. Without the scary dips, you don’t fully appreciate the joy-filled feeling of coasting along the top suspended between earth and cloud. When I think of the image of dips, troughs or valleys it calls to mind a hugely famous Bible passage. In Psalm 23, David writes,

Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

He doesn’t write, ‘even though it’s possible I might walk through the valley of the shadow of death one day’. He seems to write it as both a present and a future reality in his life. There are times when he feels completely at peace with the Good Shepherd, and there are other times when without the presence of God, he would likely be consumed by fear. Even though he walks through the valley, he will fear no evil. I find it’s important to remind myself that ups and downs are not only an inevitable part of life, but that God is close to us throughout all of these situations. As Tim Keller writes in his book, Walking with God through Pain and Suffering;

Why should we be surprised then … that our lives are often filled with darkness and pain? Even God himself in Christ did not avoid that. But though God’s purposes are often every bit as hidden and obscure as they were to Job and to the observers at the foot of the cross, we – who have the teaching of the Bible and have grasped the message of the Bible – know that the way up is down. The way to power, freedom, and joy is through suffering, loss and sorrow.

– Tim Keller, Walking with God through Pain and Suffering, p.52

God doesn’t enjoy seeing people suffer, and generally speaking people don’t enjoy seeing others suffer either, but one of the things I’ve been reminded of first hand is that God is at work in our suffering to draw us closer to himself and to cause us to be thankful for the good gifts he gives us. While suffering isn’t fun, God can cause it to be a source of blessing. As Jesus says in Matthew 5:4, “Blessed are those who mourn, for they will be comforted.” The comfort we receive in times of mourning is a blessing. At work behind Joseph’s adversity in Egypt after his brothers tried to get rid of him, God was raising Joseph up as one through whom the entire nation would be blessed. His brothers meant it for harm, but God meant it for good (Genesis 50). Of course Joseph’s story points to Jesus, who was also rejected by his own people, and whose suffering was part of God’s plan to save many more people through Jesus’s death and resurrection. The reason for our trials won’t always be this clear to us, but God is with us and he is at work even when we can’t see how or why.

What our family is going through is not unique. We are not alone. There are others out there in similar situations, and there are others who are facing more difficult things than we are. I certainly don’t want to trivialise or dramatise suffering, nor do I want to approach all the unknowns ahead with a cold stoicism. Instead I want to face it with the strength that God supplies, because my own strength isn’t enough, to be as prepared as I can by resting in his sovereign goodness and his promises, knowing that the peaks and troughs will come, and that he is with us through all of them. Keller writes,

If the mind is well prepared, the coming of adversity will not be a complete shock. But when suffering first hits you, the gap between what you know with the mind and what you can use out of your store of knowledge in your heart can be surprisingly large. When troubles come, you will need God’s help to find the particular insights, consoling thoughts and wisdom you will need to get you through.

– Tim Keller, Walking with God through Pain and Suffering, p.199

Living in the Depths, Seeing God in the Heights

This week our son, a precious gift from God, will have a life-saving operation, but he will simultaneously have a device inserted into his brain that is imperfect in its ability to heal him completely and is likely to fail at some point. Thankfully, God never fails and while modern medicine is an incredible blessing, it is not where our final hope and peace ultimately lies.

Once again as we take the ‘next steps’, as the roller coaster prepares to fly back down a steep hill into surgery, another hospital stay, risk factors, possible complications and so on, I find comfort in these words from the Valley of Vision, knowing that God has brought us here, He has brought us this far, He is with us always and His glory can be found even in life’s valleys.

LORD … Thou hast brought me to the valley of vision, where I live in the depths but see thee in the heights …

Let me find thy light in my darkness,
thy life in my death,
thy joy in my sorrow,
thy grace in my sin,
thy riches in my poverty,
thy glory in my valley.

– The Valley of Vision

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2 thoughts on “Looking Down the Roller Coaster

  1. This is an incredible testament to two phenomenal parents, an amazing baby, and a great God!!! What an inspiring story of faith.

    • Thanks brother! I don’t think there’s much that’s phenomenal about me as a parent, but I do serve a great God who uses even my brokenness and imperfect fatherhood for his glory. 😉👍🏻

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