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The premature infant

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Gawain

-Introduction

-The Onset

-The First Year

-The Greatest Paradox
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The Onset

Gawain Alexander was born on the 26th of March 1994 and came to life 7 weeks premature. Perhaps it is due to the large audience present as he stepped out onto life’s stage, that his interest in people got started. In any case, beyond his mother and father, there were five midwives and equally as many doctors at large. Shifts were changing, and as no other women were trying to deliver babies in the hospital on that morning, the delivery room, which served the double purpose of being a hallway, was swelled with the bustle and comments and suggestions of the on-coming shift, whilst none of the previous staff seemed to be thinking of leaving.

And it must have been a great fest – an unequalled, joyous experience, if it weren’t for one guest whose invisible presence served to dominate the occasion – and his name, though many may not have recognized him – is fear. And it was in the name of fear that all those lovely people, each one eager to do their best to help mothers bring children into the world, let fear’s accomplice take over the ensuing events - and his accomplice’s name is "medical technology".

In many ways medical technology had been sparring with me throughout the pregnancy, causing undue uncertainty, conflicts, demanding decisions which sometimes needed to be fought for against medical advice, but at Gawain’s birth and in the ensuing weeks it was clear who got to play the leading roll:

High doses of anti-contraction medication that caused shaking, sleeplessness, strong pulsing heartbeat, vomiting and confused thoughts were able to delay the birth at the most 24 hours.

The birth position was determined by the belt, which had a monitor to pick up the heartbeats. Because Gawain was small and could often slip away, I had to stay positioned so that the heartbeats could be heard. No one asked if this position was bearable or inducive to birthing.

In the last stage – in the last few minutes before birth - 2 desperate attempts were made to cut into his scalp and lay an electrode as the heartbeats disappeared when the child entered the birth canal. The cuts were made, the impantation of an electrode failed, and the last stage prolonged by several minutes.

But after Gawain was born, there could be no waiting. He was hastily plopped onto my chest naked for a fraction of a second whilst the cord was cut. Then he was grabbed by his feet and head and transported equally naked, half upside down through a hallway and there set down on an examining table.

He breathed on his own. He did not turn blue. He could make some crying sounds. Respiration seemed somewhat difficult. He was 1830 grams and not the tiniest of premature babies and still standard procedure had the upper hand, which at this moment meant reanimation.

Gawain, as with almost every other premature baby, was allowed three entire minutes to recover from the birth process and "adjust" to his radically new situation - to catch his breath - before the decision was made to insert the respiratory tube.

This procedure is never done on an adult or an older child without narcoses, because it is extremely painful. A premature infant cannot defend himself and a doctor's strong hand has accomplished it quickly. The consideration is not made, that amongst many other disadvantages, one takes away the child’s ability to start to cry and so to breath deeply. One can no longer notice if the child can breath on its own successfully. In any case they thus transported Gawain to the neonatal clinic, which was located one mile away.

It was in those minutes and the ensuing weeks that I learned how intense the pain is, which is not ones own.

I needed 24 hours before I could successfully fight through hospital procedure and receive permission to visit Gawain. My husband Michael had warned me that it would be hard on me…

Gawain lay under a sea of tubes, cables and hospital tape. He was surrounded on all sides by monitors, respiratory devices, medicine feeding apparatus – each with its own alarm system, so that even the smallest movement that he made released a ringing, buzzing or high pitched peeping, accompanied by blinking lights.

But he could not move much. Sedating him heavily had not sufficed to prevent him from continuous attempts to pull out the respiratory tube. He was therefore restrained as well – the tiny arms were secured with plastic cuffs that were tied to the sides of the incubator.

Gawain could in the first days repeatedly grasp the tiny tube with perfection, and pull it out of his nose and windpipe. Four months later I began to ask myself, why he did not, could not, never did look at his hand, grab and hold onto his own hand, put his hand in his mouth, try to grasp other objects. Such a perfect movement was never repeated and to this day no one has been able to explain this phenomena to us.

On the fourth day he suffered from a torn lung or so-called pneumo-thorax due to excessive pressure of the respiratory apparatus, and so two vacuum powered drainages had to be inserted into his right lung in order to prevent it from collapsing until the tear healed.

On Easter Sunday, his eighth day, the doctors removed the respiratory tube. Just before doing so they opened the main artery in his neck between the head and the heart to be able to ensure the steady flow of antibiotics, cortisone, sedating drugs and various experimental drugs which were designed to ensure a quicker growth.

We decided not to attempt to interrupt the doctors in their implementation of treatment, but Michael and I fought in order to be allowed to be with Gawain as much as possible. There were many nurses who welcomed us and encouraged us saying that Gawain had much better chances for a quick and healthy "recovery" if we spent much time with him. Michael would return at night and play a small lyre, which he placed against the wall of the incubator so that the tones resounded and vibrated inside. We insisted that he be allowed to lie on a lamb’s skin and later Gawain was even allowed to have a blanket.

The head doctor was irritated about the blanket. "We need to be able to see the breathing", he said. This I could not understand. I had repeatedly observed, that when the doctors did their morning rounds to visit the patients, the first thing, which they did, was to place their broad and heavy charts on top of the incubators sufficiently covering their tiny patients. When they were finished discussing the things written in the charts, they picked them up and moved on to the next child, repeating this procedure. Seldom did they cast a glance underneath the charts and into the incubators.

In addition, I noticed after several days that Gawain’s breathing was indeed very unusual. When he breathed in, the chest collapsed inwards and his abdomen extended outwards. I called this: "pulling in". When he exhaled the chest relaxed somewhat. "Why does he breath like this?" No one could answer. When I tried to breath like that myself, I felt ill after one breath. It was first through our meeting with Leonid Blyum and the ABR therapy, seven years later, that we received an explanation for this phenomenon.

In the few minutes each day that Michael and I spent outside of the ward, we asked ourselves again and again: "Is this the only way of treating such children?" "Is so much invasive treatment called for?" "Is it helping Gawain or perhaps even complicating his situation?"

Strangely enough, it was in these weeks that the story of Vienna’s Dr. Marina Marcovich and her innovative work with premature infants reached the German media. Dr. Marcovich developed an alternative treatment method for premature babies involving an absolute minimum of invasive treatment and an absolute maximum amount of contact and gentle soothing care. "If a person is in pain, experiences fear or discomfort, the bodies demand for oxygen increases. We did what was only natural, we put the children on the mother’s breast, giving them the warmth, softness, scents, noises which they were used to." This reduced the need for the respiratory tube and a transition period of a few hours with an oxygen mask was almost always sufficient. This also reduced the rate of handicap and developmental difficulties to an astounding 4%. (Here is interesting information about her work:  http://www.fruecheneltern.de

The contrast between Gawain’s treatment and the one implemented by Dr. Marcovich was distressing and puzzling to say the least.

When Gawain was finally released after 1 month, no one mentioned the high-risk category that he was in. According to NIDCAP’s homepage: http://www.nidcap.com  this reaches over 50% for premature babies with traditional treatments

We were giddy and light-hearted when we took Gawain home. Spring had finally warmed the city and the air was rich with blossoms. We were rich, too. We took something endlessly precious home with us, and we had not a care for the future. We were innocent to the fact that the child would be diagnosed as a CP quadriplegic child with one year of age and that the next years of continuous confrontation with the medical community would present no real answers for the problems that he had. It could not have been difficult for us to estimate what the troubles might be which were to come. We did not.

 

 

2 1/2 weeks old

 

2 1/2 weeks old

 

3 weeks old - the first day on mother's arm

     

May 2002

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