The unpronounceable disorder

It's been a somewhat longer period of silence than I had expected, for which my apologies. As I mentioned, the first reason for this blogging break was work related: an approaching deadline that brooked no delay. But that target date was met (just) last Friday, and nearly a week's gone by since then. So why the continued silence? Well, this is family related. You see, the younger Minimus Minor was due to have quite a major operation today, but it's all been postponed, again.

This all goes back to Mrs Minimus's first ultra sound scan, at 20 weeks. We were not expecting any problems with this second pregnancy, so I didn't take any time off work to accompany her. What they discovered there, and was later confirmed when we were transferred to a specialist pediatric hospital in south London, was that our son had a potentially fatal condition called congenital cystic adenomatoid malformation, where a mass of cysts develop instead of proper lung tissue. There is a peculiar sort of humiliation in knowing that your child might be killed by a disorder you can't even pronounce. What we saw in the ultra sound scans was a left lung that appeared bright, hard white, and swoolen so much that rather than his heart being on the left side of his body, it was pushed over onto the right. This, of course, is one of the areas where the condition can prove fatal: the heart is placed under such pressure during pregnancy that it develops what's called foetal hydrops, and fails. Thankfully, the first scans at Kings College Hospital (the specialists in this field) indicated that the heart was not under undue pressure. Still, the key thing was what happened during the following weeks. Would the cysts continue to expand, until the heart, crushed against the ribs, gave up the struggle?

One of the peculiarities me and Mrs Minimus found in our response to these problems was how paralysed we both felt. It was only with the greatest difficulty that either of us could muster a prayer at all. Thankfully, though, we had many other people praying for the child, and over the weeks of pregnancy it seemed that the infected area of left lung was not expanding with respect to the rest of the little lad's growing body: that is, everything was growing at the same rate. However, when the nine months eventually came to an end (and they were a long time ending) and the time came for Mrs Minimus to give birth, we still had no idea what sort of condition the little chap would be in. The doctors seemed to be of the opinion that he would have difficulty breathing, and might well need immediate surgery to remove the effected area of lung tissue.

When he did emerge into the world, Minimus very minor, was, literally, bright blue. I don't know if you've seen popular prints of the god Krishna. If not, google some images. The lad was that colour exactly, the blue of an Indian sky swept clean by monsoon rains. Normally, when a baby is born, the mother is rewarded for all her efforts with the baby being placed on her chest. In this case, the midwife dipped him towards my wife's mid section, and then he was whipped away by the doctors into a corner, where the (possibly unnecessarily large) team that had gathered for his birth worked on him.

A few breaths and the baby went from bright blue to mottled white and grey. But he was breathing. A day or two in intensive care followed, but he seemed to be breathing without any difficulty on his own, so we were allowed to take him home, with the proviso that we had to return in a couple of weeks for a CAT scan to see what had happened to the cysts in his left lung.

When we had our first scan at 20 weeks, all we could see of his left lung was infected tissue, the hard white of microscopic cysts broken by an occasional dark space indicating a larger cyst. Now, at his CAT scan, it seemed that only some 10-15% of the left lung was effected. We were told that nothing more needed to be done at the moment, but he would be scanned again in a year's time. Over the weeks following Mrs Minimus and I came to the conclusion that all those prayers had worked: for from the time we first knew about the condition, and people began to pray, it seemed that the cysts had stopped growing while everything else around them continued developing, so that the relative area they occupied gradually reduced.

Minimus minor proved a healthy little chap, so when he went for further scans (at 18 months rather than a year – the hospital forgot about us and only some chasing reminded them that our boy was supposed to be monitored and scanned again) we expected only more of the same: a further reduction in the relative volume of the cysts as Minimus minor grew around them.

That was not the case. The cysts now took up some 60% of the left lung, and the doctor advised that they should be removed.

It's a strange thing to be told that your son, not yet two, who is showing no signs of illness whatsoever, requires major surgery and the removal of most of a lung. If he was obviously ill one would have no doubts about the correct course of action, but I must admit that I became, again, almost paralysed with fears and phantoms. Half remembered stories of botched operations haunted my mind. Was I, his father, whose duty was to protect his children, sending my son to his death to protect him from the effects of a disorder that as yet seemed to have had no effect on him?

Well, a date was set for the end of October, and a talk with the consultant eased some of my fears, although the imaginings seemed beyond the reach of rational argument. And then the hospital cancelled the operation. Another, more urgent, case, required the surgical slot. We were put on the waiting list. And during this winter that is just now easing to a close in the teeth of a cold north westerly, Minimus minor did develop some chest infections.

A date was finally set for 1 March. This meant that Minimus minor would spend his second birthday (2 March) in intensive care. Last weekend the fears, imaginings and terrors hit me again. And with them, spiritual paralysis. I could not present these fears to Him in prayer. But I managed to admit them to a priest, and some easing followed that. And I can't say our general state of nerves was helped by the elder Minimus minor (who is four and a half) piping up over supper a few nights ago to say: 'God is coming to take Matthew away.'

Maybe He is. But if so, not yet. Two days before the operation Matthew developed a cough. A visit to our doctor showed that it had developed into a chest infection, and a phone call to the hospital confirmed that the operation would have to be postponed, it not being possible to operate while Matthew has an active chest infection. Now we're told there should only be a delay of two or three weeks.

However, I now have a very good idea of what a suddenly deflated tyre must feel like. Part of me is relieved to have this delay, and not having to face the radical giving over of my son into another's (and God's) hands that surgery represents. But, on the other hand, it means we'll have to face it all again. So if I go silent sometime in the next few weeks, it's probably because the operation is due.

Anyway, hopefully back to something like normal for the moment. Thank you for continuing to stop by my blog despite my absence.

Comments

[Theocoid]

That's a heavy burden to try to carry by yourself, friend. I'm sure you'll seek the Lord's strengthand the intercession of the Blessed Mother and all the saints.

We'll be praying for you, your family, and for Matthew.

[Galileo]

You can count on my prayers as well.

[Sharon]

My prayers are with you and your family and especially for Matthew.

God bless
Sharon

[Paulinus]

Albertus, I was so very sorry to read of all this and I hope all works out. Paulinus Minor Major was very poorly at 3 months and I remember well the spiritual paralysis his illness brought on. If you can't pray, I'm sure all who visit here will do the praying for you. I certainly will.

Please email if you need a virtual shoulder. Whether you do or don't, you will have my prayers.

[Albertus Minimus]

Thank you all for your comments, kindness and prayers. I really do appreciate them. Paulinus, it's particularly encouraging to know that you and your wife, in similar circumstances, felt spiritually paralysed too. It's strange, but it seems like when me and my wife most had need of God's mercy and blessing, that was the time we were least able to ask for it.

[Bekah S.]

He knows our hearts, He knows our thoughts. I don't doubt for a minute that we necessarily need to voice these for God to hear and answer. We are told the Holy Spirit interprets anyway. I also believe your guardian angels are all petitioning on your behalf as well. Let God hold you in His hands while the rest of us lift you up for you! I don't believe there is a worse feeling in the world than a parent fearing for the life and health of his child. While we've never faced anything extraordinarily serious with ours, our daughter (child #2) spent three days in the hospital at 6 weeks of age, due to some infection that got the best of her. She was so dehydrated when we took her in to the ER that they couldn't get a vein open enough to draw enough blood to diagnose the infection. They ended up putting the IV line through the bone of her knee, after atempting several different placements, and in the end they administered IV antibiotics hoping it was bacterial (which it was). It's such a helpless and frightening experience.

I'll add my prayers to the many I know are being offered, for the health of your son, and for the spiritual and emotional support of your entire family.

[Maureen]

I just went through a bit of a breast cancer scare (it wasn't, thank God), and it was harder on my mother than me. As you probably understand.

I will pray for your son, also for you parents. (And your other kids.)

[chris]

Hi

You're not alone. Our little one Heidi was diagnosed at 20wks with CCAM. We have yet to hear about surgery, but its on the cards.

One hospital set the date for around her 1st birthday, now a second has told us to prepare for surgery around her second. She seems fine but we know that she's got to have the op to prevent any future problems.

Its a hard burden to carry, especially when you look into her beaming happy face and know that she has to go through what is a major procedure.

[Albertus Minimus]

Chris, thank you very much for leaving your comment. I've read your blog and I see that your experiences with doctors have been very similar to our own. We would very much appreciate it if you could email us: the address is albertusminimus@yahoo.co.uk

Thank you.

[Albert]

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