'The doctor encouraged us to pray that she died quickly': Dad shares heartbreak of genetic disorder

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(Getty: Andrew Bret Wallis)
(Getty: Andrew Bret Wallis)

We recently published the story of baby Kamogelo, who is fighting a rare genetic disorder, and it touched the hearts of many of our readers. 

The family has since received some help and support, and we hope that soon they will be able to take their son to the US for treatment. 

You can read their story here: Time is running out for baby Kamogelo, as he battles rare genetic disorder 

Touched by their story, dad Johan wrote to us to share his families terrible story of loss - not once, but twice. As the father of two children born with an untreatable genetic disorder, he understands what Kamogelo's family is going through.

Johan's story takes place in Zimbabwe, in the late 70's and early 80's, when access to medical care wasn't as easy as it is now, and when international medical assistance was only a dream. 

Here he shares, in his own words, every devastating detail. 

Our wildest dreams 

Our little girl was born in August. She was making tremendous progress in her development, and we could never in our wildest dreams imagine that something might be amiss.

Just two months later my wife realised that something was wrong and she told me about her concern. I was extremely busy on the farm and could not spend much time supporting her.

Soon she went to Harare with the baby to consult a doctor. That same afternoon a tornado struck the farm, probably the only one that has ever happened there. Hailstones and wind devastated our tobacco seedbeds just before we were due to start planting. The tobacco barns were left in ruins.

It was a disaster of immense proportions to us. When my wife arrived home faced with this devastation, she broke the news to me of the visit.

A second opinion 

The doctor was not concerned, in fact totally unconcerned, and as the baby was drinking well and not underweight he suggested my wife should also not be concerned.

As she walked out of his office she bumped into his nursing sister. She asked about the baby and my wife again expressed her concern. The nurse looked at the baby, and immediately said that the baby was very ill and that my wife should take her to a specialist.

We were now both very concerned.

How my wife managed to get through the next few months is a testimony to her courage and incredible faith. Not many women would have held up under the pressures of war and a sick child, and remain sane.

After some tests by a brain specialist, a very well known and capable man, he informed us that the news was not good. Our daughter had some brain disorder, but he did not know what.

The utter despair 

Slowly we learnt what an intricate system the brain was, and what little was actually known about it. It seemed there was very little hope for our daughter and we should prepare ourselves for the worst.

The utter despair, the incredulous unbelieving, how could this be happening to us? Surely it could not be true. Surely these things, no, only other people suffered such a fate. Why? How could it be happening to us?

People talk about the depths of despair. I realize how desperate this is, but it all felt much worse. It was an expanse of nothingness that you floated around in, sinking into this thick nothingness, and it was choking you with an unbelievable hurt!

You had the desire to run and run and run, but knew you would be running into an oblivion of the present. You knew there was no escape, but sometimes you almost looked at yourself and your situation as if from an outer body experience.

If you have ever wondered what hell was, this was it. Only you were living it in the present, it was your hell.

So little support 

But in the meantime normal life for others and for us had to, and was continuing un-relentlessly. When on the farm I was out in the lands from dawn to dusk.

Tired and dirty at night I would return home to my wife. She was becoming more and more desperate in her own way, and there was no support for her. No moral support, not enough loving arms around her, no physical support to cope with something that no mother was surely destined to experience.

I couldn’t be these things to her, not because I was hardly ever there, but because I simply couldn’t even help myself.

It was in these times of absolute despair that we realized how little support was available for people in such a situation. Not many people can provide advice through experience. Since then we have tried in our inadequate way to help others.

Complete helplessness 

In the lands I would wander off into the bush and cry and cry and cry as I am now, until I became almost totally irrational to myself.

Our daughter started spending more and more time in hospital and my wife would spend endless days with her helping the nurses to feed and comfort her. By this stage epileptic fits were also occurring, and they were increasing in intensity and regularity.

It was horrific and a state of complete helplessness to only be able to hold this little body and hopefully provide some form of comfort. The specialist had determined that brain atrophy had set in, whereby the brain slowly degenerates until death eventually occurs.

But the cause of this was unknown.

It was a genetic disorder, and both parents are usually carriers. If it could be established what the cause was, then a cure could possibly be contrived. But there was no way really of determining what it was, but he did tell us that he doubted whether there was anybody in the world who could help us. Medication was mainly to temper the epileptic fits.

A Christmas spent in misery  

That particular Christmas held no good prospects. A nursing friend had offered to look after our daughter at home while we went to church. On our return she was virtually a nervous wreck, and almost couldn’t wait to get away from the situation.

The fits had taken a tremendous toll on her in those few hours. That was a Christmas spent in misery and despair, and with absolutely no hope. 

Eventually we reconciled ourselves to the fact that we could only watch her regress and slowly die.

I clearly remember one afternoon in hospital carefully questioning a sister on euthanasia. I knew I had to do it in such a way so as not to evoke suspicion. I know today that if it was at all possible I would have contemplated this option very seriously.

I doubt if my wife as a mother would have agreed, and I also doubt that if it came to the final decision, whether I would have had the conviction and final courage to do it.

Thoughts of despair 

One Saturday afternoon I was in the lands about five kilometers from home. It was into the New Year. It was hot and I was hot and dusty and filthy. My wife arrived at the land, something she very seldom did, and I could see the concern in her face as she explained that the specialist had phoned and requested we come to the hospital.

Our daughter was not well. It was almost two hours before we would reach the hospital to find out what was happening. So many thoughts of despair fly through the mind, and they all make the thinking more and more confused.

Oh God, it is so difficult to continue writing. I cannot control my tears and heartache! 

We arrived at the hospital and stood at our daughter’s bedside, stroking her almost bald head, kissing her incredibly beautiful mouth, and waiting for the specialist. He was the most incredibly soft-spoken and comforting man.  I wish I could show him to the world. He feared that she would not live much longer, but quietly encouraged us to pray that she died quickly.

These patients could often linger very long in clinging to life, and even though we wanted her to be brave, we also wanted her to go in peace.

She clung on!

It is so painful and difficult to relive this part of our lives.  Because of her illness our daughter had not been christened. One Sunday I was playing in a cricket match at the local club just outside the city.

My wife arrived from hospital and said that urgent arrangements had been made for the christening in hospital. I had to come immediately. I left the field and went to the hospital with her.

Our dominee (priest) was there and the ceremony was performed. It gave me some satisfaction, but I think even more so for my wife. At this stage it was vital that all her expectations needed to be fulfilled, and this was extremely important to her.

I am glad my wife went through with this. Not that it would probably have made any difference in the context of the bigger picture, but for personal peace of mind. 

No proper way of reacting

On the 9th of March I was away from home when my wife phoned to say that our daughter had died that afternoon. 

I was initially very calm when I received this news, and had expected it.

I had never faced the death of a close relative, and did not know how to react. It is strange to say this as if there is a proper way of reacting.

My emotions were by now very confused. I knew her death was inevitable, but then started to query why this should be happening to us. I was relieved and glad that her and our torment was suddenly over.

But I was incredibly sad that I had not been offered the opportunity to also have a daughter to love and cherish.

The road traveled in those nine months had been incredibly happy and incredibly sad. It had become a tiresome journey with many questions and no answers. We would seek for the rest of our lives.

I crumble easily 

We decided on a cremation, although even today I know my wife had a long struggle to come to terms with this decision. This was on the 13th March. A bronze plaque adorned a rock in the gardens of the cemetery.

For many years I have taken visitors to Kariba and traveled in sight of the cemetery. Often the tears well up inside me, but only once did I have enough courage to visit the site. This was with my wife and son. It was a very traumatic experience for me, and I have never been back.

I am extremely emotional at times, and even though I try and portray a manly macho face, I crumble easily, emotionally. Today the plaque doesn’t exist anymore. Vandals have taken care of that. 

Another try

We had a serious discussion with the specialist considering our psychological conditions, and whether we should consider another child.

He explained that as this was a genetic disorder, it usually occurred in one out of four children. We should be fairly safe if we had another child.

We had not given permission for an autopsy for the simple reason that we thought our daughter’s body had suffered enough.

Even knowing the name of the disease would not change anything, not now or in the future as it was an incurable disorder. We decided we would try again.

How privileged they are 

My wife had become pregnant, and because of the previous experience with our daughter the local doctor referred us to a specialist in Pretoria. He had been at university with me, and a pleasant reunion it was.

He was shocked to hear of what we had been through, and assured us that all would be well. He was good to my wife, and on the 11th March a bouncing, howling little boy arrived. Strange that the date should be right between the death and burial dates of his sister!

Wife and baby came home and it was just wonderful to have such a peaceful baby in the house. My wife has always loved children, and has a very special way with them.

Our eldest son had started school, and was also proud to have a little brother. He couldn’t understand though that he was not yet ready to play with him. It was such a fulfilling feeling being a normal working husband and father of two.

People don’t realize how privileged they are to lead normal lives as normal human beings.

Apprehension 

Towards the beginning of May my wife became apprehensive and asked me to watch our baby carefully. One morning I was sitting on the bed playing with him when I noticed the slightest of twitches in his face.

My body and soul almost collapsed in disbelief. Although only the slightest twitch, I knew then that this was the beginning of the end.

It was going to be another long road to our own hell and back. Oh God why again, why us again? Surely it was not true it could not be true! 

I phoned my specialist friend and told him what I suspected. He could only curse in absolute agony and shock. We made arrangements to visit another child specialist in Pretoria.

I remember sitting across the desk from this specialist with the baby in my lap. He had three epileptic fits almost simultaneously. Although not major fits, they were fits.

The most mortifying feeling  

I told the specialist the baby was having fits. He didn’t believe me! He again looked at and examined the baby and to my absolute amazement said that there was nothing wrong.

This was after blood tests and other tests had been done, including a brain scan in what was then a new technology.

I couldn’t believe that this was a repeat performance of the doctor in Zimbabwe. This was supposed to be a specialist, and he was supposed to know what he was doing.

It is the most mortifying and helpless feeling to be in this situation. Here was a respected man in his profession but seemed totally unconcerned. This is when you wish you could make a case and sue doctors for their whole existence.

I could have killed him 

All my remonstrations about his wrong diagnosis was like water off a ducks back. I insisted I wanted to see another specialist, but he refused to part with the test results he had. It is probably the closest I have come to physically attacking a doctor.

I could quite easily have killed him or done him serious damage and it took tremendous control not to do it. 

We immediately scurried around to find another specialist, and just one floor higher up in the same building was a specialist willing to help. A woman!

But what a specialist and what a woman. No nonsense from anyone.

We told her what had transpired and what the history of our daughter was. She ordered the results from the other specialist and told us to wait for fifteen minutes.

This child would die 

When she called us in she knew our history and immediately told us that this child would die.

She could not save the baby, but we all realized that miracles were possible. She would do all from her side to make this possible. Even though we knew and expected this message, it was shattering to hear it so directly.  

What made this woman so special was not only her incredible performance as a doctor, but she was also terminally ill with cancer. She knew what death was about, and what it meant to wait for someone to die.

The only difference is that she was awaiting her own death. She had no pathetic sympathy, but was extremely rational and sensitive. She proposed tests and a brain biopsy. This was done.

Nobody really cared 

I remember racing to a Pretoria hospital one morning after being summoned for the biopsy. I was urgently required to sign the necessary forms. Hazards flashing, heart racing, mind totally confused, but nobody really cared about my predicament.

I wanted to stand in the street and shout it out to anybody and everybody. More in frustration and the hope that others could possibly help me shoulder the burden!

But the strangest feeling of all was to realize that the other people in their cars were not concerned! No, it was just another ordinary day in their lives.

To see that swollen and bruised little head after the biopsy, the little body struggling to breathe in, made me wonder if it was really worth the effort to have this done. Especially in the thought that you knew they would find nothing that would save his life.

A search for answers 

It was during this ordeal that we started searching wider and wider for answers. There was talk of people cured during mass ceremonies by faith healers. We were offered accommodation to visit such a person in Durban. We did not take up the offer, and I have never regretted it.

The confusion and doubts surrounding the illness of our son only increased. Some slight improvement, then another step backwards. In the meantime the whole situation was taking an incredible toll on us.

When he was better we would bring him home and my wife would give him all the attention and love she could find. Her task was totally unnatural and unenviable.

It was beyond comprehension that a person filled with so much natural love could not be afforded the opportunity to give this to normal growing children.

One of the most heart-shattering moments occurred one day when our eldest son was in the room with us. He looked at his brother and quite naturally asked, " Must my brother also die like my sister" . Not even realizing what it meant, but I will never forget those words.

A little sympathy 

I would travel during the day to fulfill my job. In the evenings I would drive home with a tape playing some of my favourite music, and would sob and sob. If it became uncontrollable I would stop and step outside and take a deep breath of fresh evening air.

I would stand alongside the road, look at stars and look for the star representing our daughter.

I would talk to her and tell her how much I loved her.

I do know that occasionally it seemed I needed the counseling and support of an outsider. It was almost as if my wife and I simply did not have the spiritual and emotional power within to support each other any more.

I would easily start talking to others about my situation, in a desperate need for just a little sympathy and consolation.

My wife on the other hand has always kept everything to herself. This is her mechanism of protection. This is still the case today. It is even strange today that my wife and I find it difficult to discuss the past, and that I almost have more inner strength to rather discuss this with strangers.

Everything hurt 

As the weeks continued to drag on, our son’s condition progressively worsened and the epileptic fits became more prevalent. 

These never reached the severity experienced by his sister, but the impact it has on a parent is indescribable. You can only hold and sooth the taught little body going through those convulsions, and almost sigh a relief when it recovers.

The times and periods he spent in hospital were becoming more frequent, and longer and longer. It was difficult visiting in hospital and especially as one was surrounded by other children with similar incurable conditions.

Then there were also the parents going through the same agony. There was no solace anywhere, no smiles in those wards.

Everything hurt, and it hurt incredibly badly. As we had experienced this lingering death we tried to help others in the ward, but there is very little one can say or do to alleviate the agony of a parent enduring the slow death of a child.

The only way out 

The hospital staff was incredibly brave and understanding. We all knew that death was the only way out.

They told us that we could use our own discretion on deciding when we would have him at home. As soon as we felt we could not cope, we could take him back to the hospital.

No parent can imagine what this feels like. You are caught up in an endless cycle. There is no way out.

No, in fact there is only one, and that is to pray that death comes sooner rather than later. Physically he had developed very well, and was an extremely handsome fair-haired little boy.

There is no way one can sufficiently praise the efforts of the nurses in such wards. I cannot imagine how they manage to cope with such difficult situations continuously, and can only hope they receive professional coaching on a regular basis. But I doubt it.

The last time 

Then the inevitable day arrived. We had taken him home for the last time and had been advised that he was now too weak to be home. His body was almost completely limp. It was 15 August.

This was the last few days and weekend he would spend in our home. It had taken four months for him to degenerate into this condition. That Sunday evening I stood over him in his cot and greeted him.

He would never spend another day with us at home. We knew it was the end in our house. He was such a beautiful gift from God.

But God, why us? I just cannot control my tears, not then and not now!

Could not find the inner strength 

It is incredible how under such circumstances other people cannot always find the sensitivity that is required. They do things and say things that you will endure for the rest of your life.

That specific weekend a family of ours decided they wanted to spend the weekend with us. Our house was not very large, and they were a fairly large family.

But more importantly we just could not find the inner strength to host these people. I phoned them and explained the situation, and informed them that this would be the last weekend we would spend with our son at home. 

They were so upset by my refusal that they have refused to visit us from that day! Unbelievable! But who needs friends or family like that?

Gone was the baby smile 

When we took our son back to hospital for the final time, we made a conscious decision after several weeks that we would not visit him every weekend. We did not stay in Pretoria, but this was not the reason for our decision.

Every visit culminated in extreme heartache, headaches, and just a feeling of total emptiness and inadequacy. It was just becoming impossible to cope with.

For our own preservation we decided to only visit every second weekend. He could not distinguish anything and did not know who we were. Gone was the baby smile that had started to develop so innocently before the atrophy set in.

He showed no response to any stimulation. We had to try and find a mechanism to save ourselves from even more emotional and psychological damage. Simply, we just could not take any more punishment.

If we were shirking our responsibilities, then so be it, and God must forgive us for that.

How lasting the hurt 

Again insensitivity from an outsider!

One woman in our community had the temerity to tell others that we did not love our child and were bad parents. She expressed the opinion that if she could she would adopt our child!

Can anyone be so grossly misinformed and insensitive to make such a statement?

If only they would realize how lasting the hurt of such a statement is! How could she even have had the faintest idea what we were experiencing, not for the first time, but for a second round?

I wish I could forget these words, but they are burnt into an already parched memory. 

You can only cry and cry 

During the last week of January 1981, I had to attend a conference in Nelspruit. I did not want to go, but did not know how to tell my superiors. It seemed as if I had used up my quota of excuses.

I knew the end was very near. That Monday afternoon I went to the hospital to see our son. I knew it was the last time. I greeted him silently, the tears flowing despite pursed lips and a brave appearance.

He was so peaceful and beautiful. It was as if he already was an angel on this earth. Tuesday morning I left for Nelspruit and the conference. But I remained uneasy.

Thursday afternoon at around three, I heard a telephone ring in the background. I was frantically and inexplicably startled into activity. It was not for me, and had no relevance at all.

I immediately left the auditorium, went to the hotel, collected my items and left without even paying my bill. I later phoned a friend and asked him to settle it for me. I knew I had to get home. I arrived home just after seven that evening of 29th January.

I knocked at the front door and my wife opened it, almost sensing who it was. She opened it and held me in an embrace, silently sobbing. I also cried internally. Yes it had finally come to an end at four o’clock that afternoon!

You can only cry and cry and cry. Now I am crying and crying! How will this crying ever cease for the rest of our lives?

A bad dream 

Again we were living the absolute despair of our situation. The loss of a second child, almost eighteen months of waiting and praying for your own children to die, was any person’s worst nightmare.

Silently there was also an inner peace quietly closing in around the soul. This was the end. Hopefully life can return to normality without death constantly permeating your life.

God alone knows how we needed the respite from our situation. The constant swings of emotion after such a death, glad it is over, then querying God, and almost wanting to tell Him that you cannot continue having faith, then realizing that you need that faith to continue. 

Looking back on it today it almost seems like a bad dream. Did this really happen to us, to me? Was it really that bad?

Now writing this I really believe it was worse. Only then we were often too numb with pain to fully comprehend the situation. Yes everyone tells us we will get over it, time will heal the wounds.

Does it? No, not really.

Now as the tears role down my cheeks I realise that only my own death will finally heal my suffering. You still long for your children, how would they look and what would they have achieved. Would they be married, would they have children, what profession would they choose?

God alone

Again we decided on a cremation. There were only about five or ten of us in the small chapel. When we asked our eldest son if he wanted to come with to the funeral, he asked us if funerals were nice. No we answered, and realised he did not quite understand what death was about.

The questions would come later.

Over time my sub-conscious has desperately tried to shut out this segment of our lives. Things like birthdates and day of death are being pushed back into a quagmire of forgettable things in the depths of the brain.

But the pain, the longing for your children, wondering how they would look today, would they be married, what would they be like, will never leave? Nothing can hide this from you. It is in your face and in your mind.

Once or twice I have come across a boy or girl of the same age as ours would have been, and with the same name. They must wonder why I have stared at them in an almost stunned quizzical frown. 

God alone knows how we miss our children.

*Edited for Parent24 by Elizabeth Mamacos

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