The
Premature Birth.
The
premature birth of baby Daniel Marsh, born at 24 weeks
gestation,
weighing
720 gramms - 1lb. 9ozs.
This premature birth story has a happy
ending.
However
it might prove distressful if you have had a premature
baby in your family, or are of a sensitive nature. If you
are reading the story because you are experiencing or
have experienced a premature birth in your family we wish
you and your family well. We hope that you receive the
same help and care we received from the doctors and
nurses, friends and aquaintances.
If
you are looking for answers, you will find only guidelines -
the support that parents (and their families) need varies
according to their circumstances, the events surrounding the
birth, and their own unique qualities. However we cannot
stress enough the need for a parent or parents to discuss
their feelings honestly (in a way you may never have done in
the past nor need to in the future) with each other, and with
the professionals charged with the care of your infant. The
concern you have for your infant will blind you to the wishes
and needs of your nearest and dearest - many couples split
due to the strain placed on their relationship.
e-mail us at: marshes_family4@yahoo.co.uk
Daniel
Marsh - with his brother and parents - a week before he
should have been born!
Picture courtesy of The
Westmorland Gazette
- The
new arrival
- The
Mechanics of Neonatal Intensive Care
- Hope Hospital, Salford
- Sympathy & support
- The Financial cost of neonatal
care
- The full extent of Daniel's
treatment becomes apparent
- A heart operation at just six
weeks old - 10 weeks before his intended birth
date
- Back in Lancaster Royal Infirmary
- At home on our own
Links to Web sites you
might find useful.
It was 5.00 a.m. in the morning when my wife Sandra woke
me to say she was experiencing stomach pains. Within 10
minutes I realised that the pains were at regular intervals -
probably contractions, but I had already called the Doctor.
By 5.55 a.m. she was on the way to Lancaster Royal Infirmary
by ambulance in labour - 16 weeks early.
Five years before, we had lost a baby girl at 21 weeks.
Our son Christopher however was born a full 10 days after the
shrodker suture (cervical stitch) was removed at which point
he should have delivered (so we had been told), so we had
elected for Sandra not to have the stitch this time. By the
time I reached Lancaster at 7.30 a.m., the cervix was well
dilated, and the staff seemed resigned to the fact that
Sandra would lose the baby, but were continuing to monitor
its heartbeat in a delivery room.
At staff change over, the oncoming pediatrician was
unable to locate the baby's heartbeat with the ultrasound
monitor, so at 9.00 a.m. Sandra was taken for a full
ultrasound scan, which revealed our baby was a good size for
24 weeks gestation, was turned sideways on, not engaged, and
still alive. Back in the delivery suite Sandra was now put on
a drip to try and stop the contractions, and given a steroid
which would improve the lungs of our as yet unborn infant. At
this point she began to have doubts about trying to prolong
the life of our unborn child for perhaps just a few short
hours or days, and Lynn, a nurse from the Special Care Baby
Unit was brought in to explain its chances of survival. I
think the loss of our first child weighed on Sandra's mind,
and she remained tearful and agitated. The contractions
stopped at mid day, but in the evening, after I had left for
home to see to our four year old son at 8.00 p.m., they
resumed. By the time I had returned from the 70 mile round
trip, our new son had been delivered three minutes before my
return, weighing just 1 lb 9 ozs. - 720 grammes.
The new arrival
A team of nurses and
doctors were grouped around the resuscitator, and I looked
over their shoulders and saw a tiny baby, no bigger than a
child's doll. Already, a tube was inserted in his nose, and
another in his abdomen. He had received cardiac massage, and
was breathing with the aid of a ventilator. Sandra was lying
on the delivery bed being comforted by the midwife, and
breathing entanox through a face mask. I knew she would need
reassurance, but I did not know what to say. Before I could
say anything, she began to lambast me for not being there at
the moment of birth, and said it was all my fault that she
was in this predicament. Then she asked if I could see him,
and was he alright. Not knowing any different, I confirmed
that he was, whilst the group around the resuscitator grew in
preparation for his transfer to the neonatal care unit. As he
was lifted from the resuscitator to the transfer incubator,
he cried three short cries, and I saw the midwife smile
hesitantly, and the group of doctors behind me murmured as if
this was an encouraging sign. For the first time I felt
strongly confident that our baby was going to make it.
The neonatal unit had chosen this day on which to
commence refurbishment, and we had been told our baby would
be stabilised, then sent to another hospital - as yet
undetermined. However it was not going to be close by, as
Blackpool, Preston and Liverpool were all full. Sandra began
to ask questions - "Is he alright?" "Where
will he be sent?" "Is there anything wrong with him?"
"Will he be brain damaged?" If there might be a
problem, Sandra had foreseen it and was certain our baby
would encounter it. We filled in some forms, filled in our
names, address, and occupations for the umpteenth time that
day, I am not sure what these were for, but on one we were
asked our child's given name, I suggested David, but Sandra
said she preferred Daniel. I agreed it was more than
appropriate as he was in the lions den amongst all the
equipment and tubes, and so Daniel he became. My parents now
live in France and I called them on a pay phone, but found it
hard to tell them precisely what was going on as I tried to
feed coins into the slot frantically. I telephoned our home
to tell Sandra's parents, and then my brother, before my
money ran out. Sandra was allowed a shower after, and a cup
of tea and some toast. The midwife must have felt the strain
too, as there were no teabags in the pot, just hot water! I
ate all the toast as Sandra could not face eating she said.
She seemed well, and soon we were taken up to the neonatal
unit, which was temporarily located cuckoo-like in M4 ward.
The mechanics
The oxygen
was from a cylinder, not plumbed into the wall, and a
compressor buzzed in one corner, supplying the air. Added to
this was the noise of constant bleeping, clicking and
chirping of alarms on the array of equipment that was keeping
our son alive. For the first time, tears sprang to my eyes,
and I cried as I held Sandra's hand. I looked at her and she
was crying again too. Sandra and I sat down as close as we
could, while the team from the delivery suite attended to
Daniel's care, measuring, taking readings, adjusting
equipment, and discussing medications and treatments. He wore
a tiny woolen bonnet to keep his head warm, which was just
smaller than a tennis ball. It was explained that a team from
Hope Hospital in Manchester would arrive to transfer Daniel
to their Intensive Care Unit, despite the fact we had earlier
been told they were closed to admissions. The treatment
Daniel was receiving was also explained, but it really did
not register. One piece of equipment constantly indicated
trouble by sounding an alarm - apparently despite nothing
being amiss, which prompted a search for the manual. Better
safe than sorry I remember thinking. Karen - the nurse
looking after Daniel was kept busy looking for equipment, and
monitoring machines, but still found time to look after
Sandra and I, and offer encouragement. Eventually the team
from Manchester arrived, and as they set up their travelling
incubator, Sandra asked if a chaplain could attend.
Considering it was now nearly 1.30 a.m., he arrived in no
time at all, fully dressed and in his clerical collar. He
sympathised with our position, and once again the two of us
cried together. Sandra then asked if Daniel could be baptised.
I was not happy because I realised she did not expect him to
survive the night, but I concurred for Sandra's peace of mind,
and Daniel was duly baptised Daniel Ian Marsh. David Brown (the
chaplain) then gave us his card with this message on the
reverse.
Do not
look forward to what might happen tomorrow;
The same everlasting Father who cares for you today, will
take care of you tomorrow and every day.
Either He will shield you from suffering or He will give you
unfailing strength to bear it.
Be at peace then, and put aside all anxious thoughts and
imaginings.
Saint
Francis de Sales
I remember thinking that it was the most apt
quotation I had come across, and later I continued to think
of it over and over again. The team from Hope Hospital
consisted of a registrar, midwife, paramedic and a technician.
They were matched by Lancaster's team and they all busied
themselves preparing Daniel for his journey. A note of humour
crept in as the midwife (Ann P.) connected up all the leads
and equipment - "could she wire up VCRs too?" and
"would she change a plug on the staff kettle?" She
quipped "I hope you're all taking notes, because I'm
going to ask questions later!" I relaxed a little as
they seemed unconcerned at Daniel's situation - as if it was
just routine. I regretted not having my camera to record the
scene to show my son when he grew up... all those people, the
technology, and their equipment and such a tiny infant.
Behind us a baby in an incubator was being fed and it looked
huge compared to Daniel. We were comforted by the registrar (Patson
M.), whose quiet manner put us at ease - a task he was later
to perform several times over at various stages. Eventually
Daniel was lifted from the safety of the resuscitator and
monitors into the inevitable compromise of the transport
incubator. After Daniel had left, we were given a cup of tea
in the breast feeding room. It had Rupert the Bear curtains,
Rupert being a favourite of mine, but as I sat with Sandra it
did not seem appropriate to indulge myself and read the
pictures. I tried to reassure Sandra that Daniel would be
alright, and that Manchester was only a short drive away.
Eventually at 3.00 a.m. we were shown to a room where we
could spend the remains of the night.
I asked that we be called at 9.00 a.m. to get breakfast
before we left for Manchester, but despite having been up
since 5.00 the previous morning, we awoke at 8.15 a.m. and
were soon greeting Sandra's mum and dad, and our son
Christopher who had arrived to visit in time for breakfast.
After breakfast, Christopher and myself took Holy Communion
in the parents suite - it was Palm Sunday but Christopher
seemed subdued, despite the gift of a palm cross. Sandra in
the meantime was discharged, and after ringing our vicar, and
a couple of friends to let them know what was happening,
Sandra and I set off for Manchester, while Christopher left
to stay with his grandparents. I cannot remember exactly what
we said on the journey - I think we discussed how we were
going to finance the long trips to Manchester; get a loan,
remortgage the house, put it on our credit cards - nothing
prepared us for the strain of the journeys - the worries, the
setbacks, the arguments etc., finance was the least of our
worries in the end.
Hope Hospital, Salford
We found the hospital, and the unit from the directions
that Ann P. had given us the night before. Entry to the unit
was by entry phone "We've come to see our son who was
brought from Lancaster last night" I said. The door
buzzed, and we entered, to be greeted by a nurse who took us
past a wall covered in photographs and letters, to the
parents lounge. Lockers were provided, a hot and cold drinks
vending machine stood in the corner, and two settees. Not
stopping to lock up our belongings (although we were told
this was wise even in an infant Intensive Care Unit) we went
straight into the intensive care ward across the corridor. It
was incredibly hot, and I had to take off my thin jumper in
the almost suffocating heat. Nothing had prepared us for the
sight of our tiny son, lying in an incubator, with tubes and
wires everywhere. No longer than my outstretched hand, there
were no nappies small enough for him, so a cotton wool ball
rested on his groin. A large red patch surrounded his navel,
where his delicate skin had been burned by the solution used
to sterilise the site prior to inserting a drip, and his eyes
were fused shut like a kittens.
A computer behind displayed his name
and four graphs of his vital signs, whilst the ventilator
wheezed on its stand along side keeping him breathing. Each
piece of equipment and its purpose were explained to us, and
we were told we could read his notes in the clipboard at the
end of the incubator. The notes told us that the journey had
taken two hours fifteen minutes, and that they had to wait
fifteen minutes in the cold for the porters to open the door
and assist the travelling incubator into the building -
consequently his temperature had fallen. Dopamine appeared to
play a large part in his treatment so I asked what it was for.
As his brain and therefore his control functions were
immature, he was unable to regulate his blood pressure. The
dopamine was administered in response to one of the readings
being taken in order to effect some control for him. We were
offered a cup of tea, and shown the parents kitchen, and the
rooms where we might stay overnight if possible. My immediate
impression was one of concern for the parents well being, not
just the child who was after all the patient. We were given a
card with two direct line telephone numbers, and we were
assured we could ring any time of day or night,
and check on the progress of our son. We were shown the wall
of photographs again which were the letters of thanks from
previous parents with pictures showing the progress they had
made - the wall of hope. Only 6 weeks later when I read the
dates and weights of the children shown did I realize only
two out of 80 - 90 children had been born at 24 weeks
gestation and reported as surviving.
We had two polaroids of Daniel, but I decided I would
document his progress on film and video to show my mother in
France, and Daniel when he was older. The week following
Daniel's birth, my mother went into hospital herself, for a
hip replacement operation,and so the photographs were the
only way she could watch his progress, but they and the video
became very important to me too. When I awoke in the middle
of the night - 3 o'clock, 100 miles away from our son, I
would get up and watch the video I had taken of him, and take
some comfort from the improvement it showed in a space of 40
or so minutes, rather than the days then weeks that had
passed in reality. Returning to the parents lounge, I sat
down in the settee, and sat for an hour or two. I do not know
if I slept or not, as I was conscious of other visitors
coming in and out of the lounge, but I was certainly rested
when I returned to the ward to see Daniel again. Sandra had
sat with me, but I had not noticed her return to Daniel's
side, but she was there watching the rise and fall of his
tiny chest.
The second visit we made, we took Christopher to see
Daniel, not knowing how he would react. Told he could take a
present to Daniel, he decided on Lego! We told him to buy a
cuddly toy for Daniel instead. We explained that Daniel would
be in hospital for a long time. "How long?" he
asked. The only time scale he understood was his next
birthday (September). Late June or July was the date
mentioned to us. It seemed a long way off - but we did not
know just how long it was to seem. We learned a new
vocabulary, as Daniel's notes showed he regularly suffered
bradycardias, apneas, de-saturations and other episodes
described in his notes in technical terms - slowing heartbeat,
stopping breathing, lowering of oxygen in the blood in layman's
terms. After a week we were allowed to hold Daniel's hand
through the porthole of his incubator. His skin which looked
like wet tissue paper had been too delicate for us to handle
him. Our first cuddle was three weeks away, at half past
midnight. Five minutes between us! I said Sandra could have
my share - we were both crying, but she insisted I should
cuddle him too. When I had him in my arms, there was no
sensation of there being anything in the blanket he was
wrapped in, and he was still connected to the machinery by
wires and tubes. The nurse took a polaroid of us, and
apologised, concerned that the white blanket had merged with
my white shirt, so all you could see of Daniel was a tiny
pink head. The next week, she chose a striking green and
white blanket!
In the meantime we attended the Easter service at our
church. It was packed with visitors, and we were late and so
ended up in the back row next to a couple and their
granddaughter. During the sermon and prayers, Daniel and his
parents were mentioned, and prayers were offered for the
doctors and nurses caring for him. Tears were rolling down
our cheeks, and so the couple asked if we were the parents.
They explained their granddaughter had been premature, and
that despite setbacks she was now three and perfectly healthy.
They paled however when they found out how early Daniel had
made his appearance, but we appreciated their sharing their
experience, and wondered at the coincidence. Slowly as people
heard about our situation, we began to get offers of help -
childminding for Christopher, and offers of financial help
for the travelling. The nurses at Hope hospital gave us £40,
and arranged for exemption from the car parking charges. My
technical drawing teacher from my schooldays offered money,
and was only placated by the promise that he could drive us
to visit! A complete stranger rang
one evening to say her 18 year old daughter had been
premature, and had some inkling of the problems we faced.
Some people asked me quietly whether they should send
congratulation cards. Sandra had been upset by the fact that
where as Christopher had received 30 or more cards, Daniel
had only a handful - she took this as a sign that he was not
expected to live and so I encouraged people to send them
anyway, and we soon filled the lounge with cards.
Sandra stayed with her parents during the week as the
journey from Southport was shorter, and as she was expressing
milk, she needed to be there every day. Christopher stayed
too, over the Easter Holidays, and the following week, but I
realised I missed seeing him most when we picked him up at
week ends. Sandra and I rowed over my request to have him
stay with me for the next week. I said I was missing both my
boys and four days with me was not unreasonable, also he was
missing school. In the end he stayed with me Tuesday night,
Wednesday and Thursday. One afternoon Sandra collided with
another vehicle on the motorway exit for the M61 whilst on
her way to visit. When she rang to tell me, she had expected
a rebuke from me. The relief at knowing she was safe caused
me to laugh as she told of the accident, and the extent of
the (minimal) damage to our car. The lady driver could not
have been nicer, lending her mobile phone to Sandra to phone
the hospital, and ringing later in the month to see how
Daniel was. During the first two weeks, at work I found
myself constantly blinded by tears which sprang to my eyes
for no apparent reason. My employer and workmates got used to
the sight of me drying my eyes, and knew I did not require
the comfort which they offered the first occasion, only time
could cure me of this affliction (I thought). We made friends
quickly at Hope Hospital amongst the nurses and parents of
other children in the unit. At least we shared the feelings
that we were all experiencing. The nurses especially were
brilliant. Their care extended beyond that of looking after
our son to looking after us when the strain took its toll. We
were introduced to babies that had been premature patients,
and reassured that Daniel's problems were not insurmountable.
They also
made a fuss of Christopher, and found him little jobs to do,
to keep him from getting bored. We had our favourites, but
occasionally would be disappointed with the response from a
nurse. I christened one "ruthless" as she only gave
the minimum explanation of Daniel treatment, in a curt tone,
but she too was a treasure. The one thing that they could not
and would not tell us however was that he would survive
unaffected by his ordeal. Their maxim was "Two steps
forward, one step back" I did not worry at this, as I
thought I knew he would pull through, but Sandra was
constantly unnerved as his condition occasionally swung the
other way and he suffered setbacks. Infection was a constant
worry, and at the slightest indication that something was
wrong, he received antibiotics as a precaution, until
cultures could be tested to confirm or refute the suspicions
of the doctors and nurses. He received blood transfusions
occasionally. Blood was regularly taken for testing, and two
or three tests accounted for a larger proportion of the blood
in his tiny body, and had to be replaced. He has a rare blood
type, AB rhesus negative, just three percent of the
population, but this did not seem to cause any problem to the
hospital, as demand for the rare type was low too.
The financial cost
The cost of Daniel's treatment was most in the first week
or two of his life. The surfactant (a type of lubricant) for
treating his lungs was £300 for a tiny vial. In the first
two or three days he received three. The registrar we asked
estimated that in his first week, with nursing, laboratory
testing of samples, medicines, transport, X-Rays, etc., his
care amounted to a staggering £2000 per day! We later found
out that in some hospitals, 24 week gestation babies are
allowed to die because it is felt the treatment of a patient
whose future is so uncertain is not worth the expense. An
American nurse working at Hope said that in the States, 24
week babies were rarely resuscitated unless the parents
insurance covered the expense. We considered Daniel even more
precious and lucky to be with us despite our distress at his
situation. I personally had often wondered if keeping a body
alive was playing God, but now I was sure that at least in
Daniel's case, it would be worth the effort and we would be
rewarded by our son making satisfactory progress with a good
quality of life to look forward to, despite the cautionary
advice of one or two friends who asked "Is it worth it
for just one or two weeks of false hope?" During the
whole time Daniel was in hospital, we stopped buying
newspapers (except the local weekly paper) and watched little
television. Somewhere about this time there was a general
election - I only remembered this on first reading back what
I have written. I remember hoping that one of the candidates
would knock on my door when I was in, so I could ask about
the incubators in the corridor at Hope Hospital, which had
been donated, but had no staff to run them, but regrettably
we must have been out when they called.
The full extent of Daniels treatment
becomes apparent
With our
constant visits over such a distance we were rarely in at
home except to sleep, and so we kept friends and
acquaintances informed of Daniel's progress via the notice
board at Christopher's school, and at the church we attend. I
also wrote to David Brown at Lancaster Royal Infirmary and
asked for copies of his card with that message on the reverse,
as I had passed on mine to another parent at Manchester whose
child had suffered a setback. She had done so much to
reassure Sandra when she had been upset, and when the role
was reversed, I wondered if we would know what to say.
Consoling persons in situations like this is not learned on
any school curriculum, and it was tempting to look the other
way rather than make an inadequate effort. We had more of our
own setbacks - Daniel spent a lot longer on the ventilator
than we were told was good for him, then one morning we rang
for a progress report, to find he was off the ventilator, and
on an infant flow driver. One Friday evening I found out just
how much medication Daniel was on. It was in his notes but
hidden away at the back. Morphine, dopamine, cisapride,
caffeine citrate, dexamethasone, indomethacin, spironolactone
and others - I felt almost let down that we had not been made
aware of the extent of his treatment, but I suppose it was to
reduce the worry. We were told that he had an open duct in
his heart. The duct, which diverted blood from the lungs
whilst he was in the womb should have closed by the time he
should have been born. Instead, he had arrived early and the
duct was still open, and was preventing a good supply of
blood to the lungs. Medication to close the duct was given
and at first seemed successful, but soon we were told that
his difficulty in breathing was likely to be a result of the
duct being still open. A wait and see approach was adopted,
and we were told the condition was usually operated on later
in childhood. A brain scan carried out on the third Tuesday
took on a dreadful significance when Sandra who was at the
hospital was told we would be told the results only when we
were both in attendance on Friday. She was so anxious that I
worried over her state of mind; so much so that I rang Patson
M. at three o'clock in the morning on the Thursday for some
comfort that I could offer my wife. He explained that it was
policy to tell both parents together so that different
doctors did not show one parent more or less hope than the
other - a process we had recognised in certain nurses which I
referred to as the half full/half empty glass syndrome. I
explained the effect it was having on Sandra, and so he told
me the outcome of the test, while I promised to keep it to
myself and only to offer Sandra reassurance, and act
surprised when we received the news on the Friday to avoid
offending the doctor on duty. A brain haemorrhage had
occurred, but was not causing concern and would be closely
monitored.
As the weeks passed we both became closer friends with
the other parents, and we all felt as upset about their
children's setbacks as our own, and they took our problems on
board too. Several times we saw babies brought into the unit,
who obviously had problems that were more serious than Daniel's.
One evening a recently admitted baby was deteriorating
despite constant attention from the nurse whose care she was
in. The next night when we visited, the incubator the baby
had occupied was empty. Nobody asked how or when, we were
just glad that we were not the parents, but felt desperately
upset for them at the same time. Nobody mentioned God by name,
but I was sure he was there, and I felt that some of the
other parents were too. We admired the nurses for their
ability to return to work time after time even when a child
had lost its struggle to live, and to start the process all
over again. On Thursday May 8th I received a telephone call
at work from the sister at the Hospital. Following a heart
scan at Pendlebury Hospital that morning, it had been decided
that Daniel would require the duct in his heart closing as
soon as possible - this would mean heart surgery at Alder Hey
Hospital in Liverpool. It could be done the next day if we
could get to Hope and sign the consent forms that night. I
telephoned Sandra, and explained the situation and she came
to meet me at work with a change of clothes. My employer said
not to return to work until I was ready, so we headed off to
Manchester, not knowing what the outcome would be. I knew the
operation was routine - the nurse had said so - but was she
just trying to put us at ease? We were met by a registrar who
brought the papers to Daniel's incubator. The left lung would
be collapsed, and an incision made to get at the heart, and
the duct would be clipped - just like that! He would be
brought back to Manchester the same afternoon, the operation
taking some 25 minutes. It was explained that all operations
carried a risk, but without it Daniel would take time to
improve and more time meant more risk of life threatening
infections. Daniel had stopped breathing whilst at Pendlebury,
and had been rushed back by 999 ambulance. I was almost
anxious to sign - we had no reason not to sign the form but
it seemed a big step and afterwards I felt guilty at my haste,
feeling perhaps we should have given it more thought. I felt
better on remembering the message on David Brown's card.
We stayed overnight, Sandra, Christopher and myself in
the double sofa-bed. It was not the crowding that stopped me
from sleeping during the night, so I crawled out of bed and
got dressed and went and sat with Daniel for a couple of
hours, whilst the night shift got on with their routine. I
wished that I could tell him that we had committed him to an
operation for his own benefit, and that any suffering he
endured would be for the better, but I could only watch him
with tears in my eyes. We waited with him in the morning
until the travelling incubator was wheeled out at midday, and
then we returned home, having been told he would be back at 6.00
p.m.
A heart operation at just six weeks
old
Jan, the nurse detailed
to go with him had promised she would take good care of him,
and let us know when he was on his way back. I rang from work
at 5.00 p.m. only to be told they had heard nothing. At 6.00
p.m. I rang from home - still nothing. "We'll ring you"
they said "it can only be a few minutes." At 7.00 I
spoke to Dr. Mazonde. He explained that there had been a
problem. In trying to collapse the left lung which did not
want to go down, they had inadvertently collapsed a lobe of
the right lung. They then had trouble reflating the lungs,
and so the operation had gone on for some time longer than it
should. However, Daniel was now in the recovery room awaiting
a transport ambulance back to Hope. I said we would set off
at 7.15 p.m. and meet him there. When we arrived at 8.45 he
was still not back, and it was 9.15p.m. when Jan finally came
to tell us they were back. I think she had been on duty since
7.00 a.m. so she left soon after. Daniel was back on the
ventilator we had waited so long to see him get off.
In the morning things were not good. Sandra was very
upset as Daniel was receiving 100 % oxygen, and the
ventilator was doing all his breathing for him. From time to
time his Oximeter sounded its alarm as the level of oxygen
absorbed into his blood fell below acceptable limits. He was
not his normal perky self, lying prone in his incubator, eyes
closed. At 11.00 Sandra asked Jan "What happens if he de-saturates
and does not recover himself?" "I don't know."
Jan answered truthfully. Sandra was distraught, and sat down
crying. I sat down next to her, and assured her that he would
be alright. I was promptly punched hard, and Sandra yelled
that I did not have the right to tell her that, as the
doctors and nurses were better qualified than I and even they
could not say that. I pointed out that I had something that
they were not allowed to admit to - faith in God, and Daniel's
ability to recover. She stormed out of the ward, and Jan said
she would go and talk to her. After sitting for a while
watching Daniel, I went to our room for a quiet moment. On
leaving to return to the ward, I was met by one of the
doctors in the corridor. "He's alright!" he
exclaimed. I stopped for a second as I realised that he was
quite excited. "He's alright now!" he said. As he
realised I was puzzled by his excitement he explained Daniel's
heart and his breathing had stopped and as the nurse
attending him sounded the alarm for help, she had realised
his ventilator tube was blocked, and without waiting for
assistance she had withdrawn it and inserted a new tube, and
administered heart massage. He was back to normal within
minutes, and his blood/oxygen saturation improved even as his
oxygen was reduced from 100% to 40%. The tube had been
blocked with 5 cms of debris and fluid from his lungs. The
doctor left to fetch Sandra and Jan, while I rushed to Daniel's
incubator. His whole manner had changed, and he was his
normal self. On top of the incubator was a sample container
with 6 cms of tubing and debris in. The nurse was Ann P. -
who once again had come to Daniel's aid.
I was crying with relief when Sandra
joined me, and she broke down too as she looked at his
monitor which displayed the sudden improvement. We spent the
next two days anxiously watching the progress (or lack of it)
in weaning Daniel off the ventilator. On the Tuesday evening
however before we set off to visit, we received a phone call.
"It's Vicky at the hospital with good news" she
said. "Daniel has had a spontaneous extubation." I
asked what it was. "He pulled his own ventilator tube
out, and is now back on the CPAP (assisted breathing) and
doing well." was the reply. On the Thursday night we
were surprised to be told he could be moved to Preston
Hospital because his condition had improved, it was nearer to
our home, and, Hope Hospital needed the intensive care bed (as
they are a regional centre). We asked if Lancaster could
accept him as it was nearer, and the Sister said she had
tried unsuccessfully, but would 'forget' to phone Preston
that night, in the hope that a bed would become free at
Lancaster in the next few days. On Friday, at midday, Sandra
phoned me at work to say he was on his way to Lancaster. It
was sad that we had not been able to say our good byes, but
56 days of 1 hour 40 minute journeys to Manchester were to be
replaced by the 35-40 minute journey to Lancaster.
Back in Lancaster Royal Infirmary
My first visit to Lancaster came as a bit of a shock. The
neonatal unit was not yet fully refurbished, and so Daniel
was in a private room in M4, all on his own. Gone was the
high tech computer monitoring of the regional centre's
intensive care suite, instead there was a saturation monitor,
and the traditional paper charts at the end of his incubator.
This was 'high dependency' the next level below intensive
care. He had arrived with a Low Flow nasal cannula in place.
This delivered oxygen from a tube looped both sides of his
head to a nasal clip, but this was soon swapped for a simple
tube inserted into the nostril, whilst his feeding tube which
had been inserted in his stomach via his mouth, was changed
for one via the other nostril - the nasal gastric tube or NGT.
Because he was in a room of his own, we did not see as much
of either the nurses or the other parents as we had at Hope,
where all the babies cots were in one large ward, although
one or two parents came to say hello when word spread of
Daniel's prematurity. If his saturation monitor alarmed, we
intervened ourselves to either silence it if it was a small
drop or turn up his oxygen if it fell too low. This saved the
nurses too much running about as the babies seemed to be well
spread out along the ward. As we arrived for our first visit,
an expectant mum and her mother, whose baby was expected to
be premature were being shown the facilities. We showed her
the album of photographs of Daniel, from the tiny doll like
figure, to the baby she saw now, and felt pleased that his
ordeal had given reassurance to somebody who might go through
what Sandra and I had done. Daniel received more visitors in
the first week at Lancaster than he had received during his
56 days at Hope, as the travel cost and time had deterred
many friends. All were impressed (or overawed) by the
technical apparatus which supported Daniel i.e. the
temperature controlled incubator, the oxygen, the NGT and the
saturation monitor. By now we were quite blase about the
machinery, and after the intensive care equipment, the drips
and medications during his early weeks thought this was low
key! After a week, Daniel was moved downstairs to the newly
refurbished care suite, and we arrived to find him in a cot
instead of the incubator. A card taped to the side said 'Look
mum and dad, no incubator' and a cartoon bird was offering
its young a worm. At last, although we had been able to
remove Daniel from the incubator regularly for a cuddle, we
could now reach over and kiss him, even if he was asleep. It
seems a small step now but at the time it was a great leap
forward, as it seemed that the next step was to bring him
home.
As Daniel's weight improved, then his episodes of slow
heart rate and stopping breathing became less and less.
Whilst asleep he took on a pale complexion, and it was feared
he might be anemic, but it became clear after tests that this
was just Daniel being Daniel.
At last Sandra was able to stop the night with Daniel,
sharing a twin room with another mother, Wendy. However, as I
prepared to leave, Wendy asked me to see Sandra in the room,
where I found her crying. She said that she felt Daniel
belonged to the NHS and not to her. All the stresses and
strains of the last few weeks which she had held in check
whilst Daniel overcame his problems seemed to surface now
that the pressure was off and we waited for him to come home.
The same week, Pat, one of the nurses arranged for us to take
Daniel out in the grounds with an oxygen cylinder under the
pram. However, as the weather was bad, we went instead to the
hospital restaurant. Christopher upset a glass of orange
juice, and was generally grumpy - probably because of the
attention Daniel was receiving from us and the staff. Sandra
got upset because Christopher was spoiling our first chance
to have Daniel out, and they both ended up tearful. When we
got back to the unit, and Daniel was back in his cot, Sandra
broke down in tears in the corridor, and Pat, and myself sat
with her. As we talked, the situation overcame me too and
tears rolled down my cheeks. Altogether we sat for nearly an
hour, and Pat ended up hugging us both. We went home that
evening feeling much better for having talked about our
feelings, and full of admiration for the way that the nurses
and Pat in particular spent their working days caring for
other children under difficult circumstances, and still found
time to help their parents too. Daniel was still on oxygen,
and Sandra became concerned when he was about to be given a
course of steroids which had led to problems last time he'd
had them. We arranged to see Dr.Ramesh, the chief consultant
on the Wednesday, and he agreed that Daniel's weight gain had
become static following the change from Prematil to Farley's
First milk, and so deferred the medication until the weekend.
On the next day however, in the afternoon, Daniel decided
enough was enough, and pulled out his oxygen tube, and
without setting off his saturation alarm! When we came to
visit, he was still off oxygen, and never went back on. At
about this time it became apparent that there was a problem
with Daniel's eyes. The blood vessels in the retina were not
developing as they should. Retinopathy of Prematurity (or ROP)
seemed to be a common problem, but after I received a call
from Sandra's father, with a tearful mother in the background
thinking he would go blind, I tried to cover up the possible
seriousness of the affliction. He was referred to Preston
Hospital, and Pat accompanied him. The specialist telephoned
me to explain the condition and implications - the operation
to correct the condition had a 50/50 chance of success. Or
seen another way only a 50/50 chance of success. I
decided to keep this information to myself and not tell
Sandra. That night we rowed in the canteen, and I walked out,
followed by Sandra. Things became so heated, hospital
security arrived to separate us. Preston referred him to
Manchester Eye Hospital - it seemed to be getting worse. I
accompanied him to Manchester to sign a consent form should
it be necessary, for an immediate Laser operation, but the
Consultant - Mr Donahue said it was'nt as bad as he had been
led to believe, and would see Daniel again in 5 days. The
words 'narrow window of opportunity' did not sound promising,
however on the Tuesday, Daniel showed slight improvement in
both eyes (to differing degrees), and the operation was
deferred again. Whilst all this was going on, Daniel had
continued to improve in every other way, and at last, we were
given a going home date!! The second eye test put paid to
this, so instead he had a one hundred day birthday party
organised by the nurses, with a balloon and cakes. But at
last, one week before the date on which he should have been
born, and 106 days after his birth, Daniel came home with us.
As we left the hospital, a nurse asked 'What will you say to
him about all this in years to come?' to which I said '[Daniel]
Don't you ever give us a scare like that again!'
At home on our own
Not having to travel to the hospital the first night came
as a real shock, and we missed the nurses and the other
parents. Our low mileage car which we had bought in September
had done 20,000 miles so far in the year and deserved the
rest! However, we were able to show Daniel off to friends and
neighbours who had been unable to travel to the hospital. We
went to visit an elderly aunt, and photographed the oldest
and youngest members of our family together.
Surprisingly the crying did not stop - I still find tears
springing into my eyes at odd moments, none more so than when
on the first Sunday when we attended church and in the middle
of the service, Christopher was singled out for a special
duty - to introduce his long awaited brother Daniel. As I
carried Daniel to the front of the church, Sandra was too
overcome to leave her seat, so I found myself in front of the
congregation with Derek Jackson, our vicar and Christopher
with tears rolling down my cheeks. A few weeks later, I
attended church with Daniel, Wendy and her daughter Georgia,
whilst Sandra stayed at home for a well earned rest. As we
walked forward to take communion, I saw a woman sat in the
first pew, who wore arm braces on both arms. Something inside
me told me this was the stranger who had rung unexpectedly
two weeks after Daniel's birth, to recount her own story of
her 18 year old daughter and offer us encouragement. I had
never seen her since, although I had seen her in Church a
couple of times before Daniel's birth. I stopped, and handed
Daniel to her, and I said "Thank you for your telephone
call and your comforting words - it was you was'nt it?"
She nodded, and held Daniel for a few moments before handing
him back. We were both speechless, so I continued to the
alter rail to take communion, my eyes brimming with tears.
Daniel has lots of tests and clinics to attend, to check
that his early birth has not affected his hearing or other
senses and reflexes. We shall be anxious for his well being
for a while yet, at least until he has left home and is
fending for himself! We still had an apnea alarm which would
alert us if he were to stop breathing for more than 20
seconds, which only happened once, at 2.30 a.m. one morning.
There was no panic as we routinely checked his heartbeat, and
colour, and restarted his breathing simply by waking him
gently to remind him to continue breathing! False alarms
happen often, but after the early panics in hospital whilst
he was in the nurses care, we are now at ease with the
equipment and procedures. A few parents have written telling
us how they are doing, but the letters from parents of babies
who still have problems are the hardest to read, as we feel
guilty about Daniel's comparatively smooth progress. A hernia
operation was planned for him - our GP was keen to have it
done soon because he said there was a danger of it
strangulating. The specialist however pointed out that where
as in adults and toddlers their active life could cause
problems, Daniel's restful hours placed him in no danger. The
anesthetist in fact was reluctant to put him back on an
ventilator quite so soon, so we had to wait once more.
The Westmorland Gazette, our local weekly paper, featured
us on the front cover under the banner headline "MIRACLE
BABY" which sums up how we feel about him, especially in
the light of stories and events we have learned of since he
left hospital - the baby in Scotland that was allowed to die
struck a particular chord. The costs of preserving a life
mean that some are denied this chance, but I firmly believe
that it is worth all the worry in the world to have a chance
to look after your child, and to love and cherish their every
advance. A fortnight later, they featured the Lancaster
Special Care Baby Unit in an article, which should have been
headed "MIRACLE WORKERS" because of the efforts
they make on the parents behalf to give our children the
start they need. We are now trying to raise money for another
vital signs Monitor for Lancaster's Intensive Care Unit. The
£10,000 seems a long way off but we can only try in order to
repay the debt we feel we owe them, and hopefully save the
life of another child like Daniel. I started the fundraising
with £105 from Windermere Taverners for producing their
fixture lists. In July, I heard that I had won £150 worth of
Marks & Spencers vouchers in a draw organised by one of
our suppliers at work, Engraving Materials Ltd. I rang to ask
if the SCBU could cash them or have to sell them if I donated
them to the cause. When they rang back, I was told that they
could have a cheque, and that it would be for £250 instead,
plus we would be featured in the company newsletter that
would be sent to 7000 engravers!
A Coffee Morning we organised at church in August raised
£282.00. We hope to have a raffle soon, and a car boot sale.
I have also given a Magic Lantern Show at Troutbeck Church
Harvest Supper, which led to a donation o £60 We went to
visit my mother in France, at Christmas, and apart from the
reception he got from his grandparents, who were seeing him
for the first time, we were deeply touched by the reaction of
the French families in the village where they live, who had
heard of Daniel's progress from birth, and came to visit with
expensive gifts for him, and a sense of awe. In February of
1998, after a long wait, Daniel finally had his hernia repair
operation, at Manchester's Royal Children's Hospital at
Pendlebury. Then after a routine check up, his troublesome
chest infection he seemed to have had for much of the winter
was diagnosed as bronchial infection, and he now has an
inhaler, for two types of steroid, used to treat asthma. Even
now however we feel he has been lucky, as the children with
whom we have remained in contact have all been back in
hospital, some more than once, mainly with breathing
difficulties, and one with a collapsed lung on Boxing Day.
Sandra recently added up his clinic appointments - 56 in 52
weeks, despite our fortnight in France in the summer, and the
Christmas holidays. He has regular eye tests, because
prematurity can lead to short sightedness, and frequent
hearing tests, so far with little cause for concern. He is
progressing slowly, with help from the Physiotherapist, the
speech therapist, the occupational therapist and his brother
who is keen to help as much as possible, (but has to be
discouraged from being too robust)! We finally took
Christopher (and Daniel) to Disneyland Paris - a trip we had
promised him before Daniel's untimely arrival. At passport
control, the officer was looking for a 14 month old baby, and
was puzzled by Daniel's dimiuative size, but with time he is
making up for his early start. Christopher proudly informs
all who ask, Daniel's age, and the circumstances of his birth,
with weights etc. He also knows how to set a saturation
monitor, and a Graesby apnea alarm, and help with tube feeds.
He has grown up fast as a result of his experiences, and we
all seem to be missing a year from our lives. The most
obvious sign is when you find yourself asking "Is it two
years already since.....?"
We watch and
read news articles regarding children in hospitals and their
experiences. On BBC's Childrens Hospital, I saw a
father explaining to camera, how his 2 month old child was
going to theatre for an operation to cure a life threatening
condition. I recognized the excitement in his voice as he
struggled to keep from showing the fear that something might
go wrong, and again tears sprang to my eyes. We collect
cuttings of new advances, (and setbacks) in the treatment of
infants - I suppose in the hope that we might learn something
new, or be able to help other parents faced with problems
such as we faced. We at least are able to recognize any
shortcomings in Daniel's development having had one child
already. First time parents are not always sure when
something is wrong, (or if something is right), and many
grandparents who might be able to help, often live some way
away. We are also trying to get a scheme of early learning
support introduced into Cumbria, that is already available in
some areas of the country - Portage is a highly respected
system of assessment, and support for children with a wide
range of difficulties, and aims to treat problems by helping
the parents (who spend the most time with the child) to help
their child develop the skills he/she needs, before starting
nursery school where problems are often detected too late to
rectify quickly.
March 2000
For the last eight months we have been paying
for Daniel to attend 'Bobbins' Nusery in Staveley, where
under the watchful eye of the staff, Daniel is learning to
interact with other children. His behaviour, with outbursts
of temper, and frustration occasionally, were of sufficient
concern for us to ask for a consultation with a child
phsychologist. As the persons with most contact with Daniel,
we have had to request investigations into Daniels health. A
good example was his hernia, which on two occasions when he
was examined had subsided enough to be unnoticed. The time we
took him to Manchester, we took a photograph which showed the
problem better than Daniel did on the day! Now, 'Bobbins'
staff are able to share some of the responsibility we have
felt, and Daniel's vocabulary has improved much quicker than
it had previously.
Christopher does not have an easy time with
Daniel, who wants his own way much of the time. When Daniel
annoys him enough he goes to his bedroom "for some
peace and quiet". Often Daniel will reject
Christophers attempts to play together, and other times try
to interfere with something Christopher is doing alone, but
despite this he will still lavish attention on Daniel when
required, and will read books to him at bedtime. We cannot
take the credit for this I feel, as so often our attentions
have been elsewhere - none more so since we bought my
employers business from him upon his retirement in April this
year. Our experiences with Daniels early birth, gave us the
confidence to take the plunge and borrow the money necessary.
September 2000
After a long bought of chest infection,
Daniel has been diagnosed as having bronchial asthma. As far
as we know, he could grow out of it, but in the meantime we
have a cylinder of oxygen in the living room. He has now
started nursery 5 days a week, at 'Bobbins' in Staveley. It
is convenient, since we bought my employers business, and it
is only a few yards from Bobbins. At present I am working 6
days a week, and long hours, and see less of the children
than I would like. Also I am responding to e-mail from
parents (usually mothers!) who have seen my premature births
community (see link below). However I discovered a Premature
Dad's site. One father had posted a message which read;
" My daughter was born 3 days ago, 2lbs 2ozs and is in
the NICU. I dont know what to do. Help". My heart
reached out to him.
Recently Daniel broke a toy car, and since I
was relaxing, I tried to postpone fixing it by telling him I
needed a screwdriver. We thought he had no inkling as to what
a screwdriver was, yet a few moments later he appeared
clutching a new set of screwdrivers in an unmarked case,
which I had recently bought and left in the porch. We cannot
imagine how he knew what and where they were!! It is as if he
was being prompted by someone/thing in order to get his toy
fixed. This was just one of many instances when he has
astounded us by an eerie knowledge beyond his experience or
years.
Special thanks to the all the staff of Lancaster Royal
Infirmary, Hope Hospital Salford, Pendlebury Childrens
Hospital, Alder Hey Hospital, Royal Manchester Eye Hospital,
the Ambulance Service, and especially all the behind the
scenes staff - the cleaners etc., - who go unnoticed and
unpraised who enable the whole operation to run smoothly.
We are grateful to family and friends, for their support
during and after our ordeal, and the staff at the Westmorland
General Hospital for Daniels physiotherapy and numerous other
clinics.
Lancaster Royal Infirmary Special Care Baby Unit is always
in need of funds. If you wish to make a donation, please
contact me for the address.
For fear of inspiring too much hope, or a fear of what
might lie ahead, I had not updated Daniel's story until now.
Daniel had all sorts of issues as a child - slow to migrate
to solid food, speech delays, but nothing compared with that
which we had feared. His absence seizures were investigated,
but cleared up on their own.
Finally in 2004 he was diagnosed as having ASPERGERS SYNDROME.
The condition is on the mild end of the autistic spectrum.
We have learned so much about this fascinating condition, yet
still know so little! Daniel continues to delight and amuse
those who come into contact with him, and there have been
touching incidents which have moved us to tears, as people
have gone to great lengths to keep Daniel in their thoughts.
Daniel will be NINE years old in March
I have placed a few pictures in an album
here:
View Daniels Family Album
Some useful
links to premature & child health sites
Dental Health* - a list of
dental problems associated with prematurity
Premature Births - a Yahoo
Group for sharing experiences and information
The emotional
rollercoaster ride of premature birth* - The
experiences of a NICU nurse with a prem. baby of her own.
Parents of
Premature Babies - a MSN group for discussion of
premature parenting.
Drugs and
treatments explained - an extensive list of drugs and their
effects when used in neonatal care.
Problems in
newborn babies - a guide to coping with different
problems in infants.
Parents 'Imagines'* - thoughts
& feelings of parents starting with the word 'Imagine....'
Thoroughly
recommended
* These pages part of premature-infant.com Other
worthwhile links can be found on the home page.
E-mail
us at: marshes_family4@yahoo.co.uk
Back to the top
To see the area where we live visit- EverythingWindermere or Lakelandcam. It is very
pretty, but a long journey to the nearest NICU. Rural areas
are at a disadvantage when an emergency of any kind arises.
Lancaster Royal Infirmary has an extensive catchment area -
one of the largest in England.
copyright Alan Marsh
Last revised: February 05 2006.
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