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.
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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 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!
Sympathy & support
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.
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.
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: firstname.lastname@example.org
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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.