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
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
High doses of
medication that caused
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
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
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
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
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:
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
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.