This is a direct transcript of a diary kept during the period 7 - 20 September, 1998.
Losing a child is a difficult experience for anyone, whether parent, relative or friend. When someone suffers such a loss, it is very isolating. You have no points of reference - is such and such an occurrence normal? Do all premature babies progress with breathing in this manner? What can I say to the parents? How do we tell people what has happened without embarrassing them?
During the days after Alexander's death, people went to great lengths, even crossing the street as we approached, to avoid talking to us - just because they had no idea what to say. This diary may help people to find words, and show bereaved parents that they are not alone.
Alexander was born at 8:36 this evening. He had the cord tightly round his neck when he was born and they had to cut it to get it off. He tried to breathe on his own when he was born, which is amazing in such a premature baby. It took them about half an hour to intubate him but then they brought him in just for a second before he was whisked away to the neonatal unit. We were allowed to see him again at around half past twelve. He wasn't yet in the incubator so we could see him properly. He had a tube down his throat for breathing and another down his nose. He also had tubes going into what remained of his cord and he had wires all over him. He is unbelievably tiny. I don't think he can possibly survive - he's much too small. He weighs 1 lb. 3 1/2 oz. He is absolutely perfect in every way.
Father Peter, the hospital chaplain came up with us and baptised him. He's now Alexander James Jude Lynn. We decided to name him after St Jude, patron saint of hopeless cases, because it's such a miracle that he survived the birth.
I have a wonderful, perfect, beautiful son, and I'm on a tremendous high right now. I keep trying to remind myself not to get to hopeful because he still only has a 5% chance of survival, but I can't help myself. He must be incredibly strong to have survived the cord.
My Alexander is still alive, and doing as well as can possibly be hoped for. He's made it through the first twenty four hours, anyway.
James was allowed to stay the night in my room and they gave him breakfast this morning. We went up to see our baby first thing, but we had to wait until the doctors rounds were over. I almost didn't dare to go up but he was all right. He's so lovely and I'm so scared we're going to lose him.
The neonatal unit is really hot. There are several incubators in the intensive care room but Alexander is the smallest baby there. His incubator is kept very humid to protect his skin, which is still transparent and very delicate, and as a result the sides of the incubator are all steamed up. There are gaps through which we can see him though.
We came down for lunch and then went back up, after phoning lots of people. We had a long talk with the registrar and he said I should express milk to give him. I'm really glad I'm going to be able to do that much for him.
We had to come down again for tea. When we got back one of the nurses said she would show me how to change his nappy, but nothing happened for a long time and in the end I couldn't keep my eyes open so I had to come downstairs again.
He's still alive. I had breakfast and then a bath, which I was just finishing when James got here. We went up straight away. I know it's silly, but I didn't dare go up by myself in case something had happened. I hardly slept last night; every time I heard footsteps outside my room I thought it was someone coming to tell me that he'd died, and every time the ward phone rang I thought it was the neonatal unit ringing down to break the news.
Our marvellous baby is doing really well. He'd been put on triggered breathing and was doing well on it, but they had to put him back on to full ventilation after several hours because he was getting tired. They're going to put him on it again tomorrow. He was beginning to get a bit jaundiced as well, so he's been put under a strong light. He's got a tiny little eye mask on to protect his eyes, even though they're not yet open, and his nappy has been left partly open.
He is wearing a tiny nappy: the smallest size you can get, and it still covers nearly all of him.
One good thing about the light was that the steam had cleared from the incubator walls. James brought his camera and video camera with him today, and took lots of pictures and film.
I started expressing milk for him today. I've tried twice so far and each time I've only managed to get about a teaspoonful, but that's more than he's going to need at first. Apparently you never get much if you have a premature baby, but what you get is much richer than normal. All the nutrients that he should be getting from you go into the milk instead.
Today Alexander is past his first three days, which are supposed to be the most critical. If only he can survive the next week. I'm so afraid something is going to happen to him.
They've started him on fats and amino acids today. They're fed to him through one of the lines in his cord. They should start him on breast milk tomorrow. I'm just praying that it's clean enough. I couldn't bear it if something happened to him, especially if it was because I hadn't washed the breast pump properly, or not rinsed off the sterilising liquid properly, or somehow contaminated the milk.
I went up to see him before breakfast this morning, and then came down and ate. James came a little later, while I was struggling to express another drop of colostrum. There's so little.
We took the bottle upstairs and saw him but we had to leave while they did things to him. They keep on taking blood samples and doing tests and I can't watch.
Later we went back and I helped to wash him and change his nappy. It was wonderful to be able to touch him at last, and do a normal baby thing with him. He is so tiny and skinny that I was scared that I would hurt him but he didn't seem upset by all the disturbance.
The nurses are really good. There are two nurses in particular that look after him; Monica and Shirley. They seem really fond of him and are obviously very competent. They have explained to us what all the wires and tubes are for, and what the different traces on the monitor mean. We find ourselves watching the monitors quite a lot.
James went home for lunch. He bought a mini disc recorder so that we can record our voices for Alexander to hear when we aren't around, and also bits of music with which he's familiar.
Today started off well. I expressed some more milk very early this morning, and managed to get about twice as much as yesterday. I've been told to try expressing about every four hours. I took it up straight away, and spent some time with my baby. Then I went back to bed and slept until breakfast.
James came later and we went up to see him. I changed his nappy again, and spent some time just touching him. His skin is so soft, although it has matured a lot from being under the light, and his hands and feet are perfect. He has beautiful wrists and long fingers with minute fingernails. His toes are very long too. I think he'll have his father's hands and feet.
This afternoon he had to have a new canula put in. I was glad at first, because I remember how painful mine got after the first day, and he'd had that one in for days. We all went into the kitchen while it was done, and it seemed to be taking hours. They tried four times to put one in, and in the end they had to give up because the poor darling was getting exhausted. I was worried sick because he lost so much blood. He's much too little to have to go through all that.
I changed his nappy again this evening. I had to be really quick because he was so tired, and at this age of course he shouldn't be handled more than is absolutely necessary.
Shortly after I finished he got a blockage in his breathing tube and for the second time today I thought I was about to lose him. He had to be suctioned. It wasn't the first time it had happened and apparently he has to be suctioned quite frequently, but it was the first time I had seen it.
He's being fed my milk now - he only gets half a millilitre every two hours. It's just to get his gut working, not really to feed him.
We finished our recording at tea time and took it up to him. Audrey, his nurse for the night, has promised to play it to him from time to time.
Today was another 'down' day. I'm starting to produce much more milk; it's now difficult to wait four hours between breast pump sessions.
Alexander may not be well. He's got a low platelet count, which is a sign of an incipient infection.
They had to put another line in which worried us horribly after yesterday, but this time they got one in really quickly.
He's being given blood, platelets and antibiotics, which please God will stop the infection before it gets a hold.
We met another couple today whose twins were born at 32 weeks. They are still permanently worried about them although they are so big. They are both over 3 lbs and are no longer in incubators. I can't help feeling that Alexander won't make it that far but I'm trying not to let myself think of that.
He did a little bit better today but not enough. His oxygen was up and down all day and he had to have his tube suctioned several times. I think he was finding it uncomfortable.
He had to have two injections through the canula in his arm, and they seemed to hurt him a lot - he got very restless. I keep remembering that time I had the antibiotics and they were so agonising. The nurse started off too fast, and even when she was going as slowly as she could it was still really painful. I desperately wish it was still me having all the injections and blood tests and bother. I feel that I've failed my baby. He shouldn't have been born yet; he should still be happy and comfortable in the womb. A week ago he was fine: he didn't even know that anything was wrong and now he's having to go through things that even an adult would find difficult to bear and I can't even explain why. The nurse who did the injections said that they couldn't hurt him because he was too small to feel pain, but I'm sure they did.
Alexander is still really sick. I don't think he's going to make it. I'm constantly praying for him.
He's showing signs of lung disease, he still has the infection, and he has an open duct in his heart. Apparently all babies do at his age, but that's why his oxygen levels have been so up and down.
I went and saw him before breakfast this morning, and then again after the doctors rounds. I was very relieved when James turned up: all morning I'd just wanted to cry. It's much easier to cope when he's here.
He's now a week old. I've had him for a whole week, when I thought at one time that I wouldn't have him at all.
My poor baby is still unwell. He's definitely got an infection. They have told us that it's probably a skin infection that got into his bloodstream on the end of one of the lines he has in him. It's the most common infection in really premature babies, and it's one that older babies don't get at all.
They had a go at putting in two more lines today so that they can take out the lines already in him, but they only managed one. They will have to have another go tomorrow. They think that the infection is probably clinging to one of the lines in his cord. They're going to give him the antibiotic through the infected line in the hope that the concentration there will target the infection just where it needs to.
Things are looking very bad at the moment. At least he's not needing any more oxygen than yesterday, and the line he has in is a good one.
I went up and saw him before breakfast, and then I had to wait to see the consultant. He wasn't much help. I don't think he wanted to say much when James wasn't there.
James got there in time to see Alexander before lunch, and we spent most of the afternoon waiting while they fiddled with lines. We only saw him briefly afterwards because he was sleepy after all the bother, but the next time I expressed milk and took it up we saw him again. I sat and stroked him for about an hour and it really calmed him down. They had to turn down his oxygen pressure several times because his levels were getting better and better all the time. He ended up at quite a low pressure.
Our baby is still very sick. I went to see him before breakfast. One of the lines they did yesterday has already come out, and they'd put another one in his arm. They also had to take out the lines in his cord.
At about ten I got a message asking us to see the consultant at half past ten. It panicked me because before he's always seen us whenever we happen to be there. I thought he was going to tell us that Alexander was about to die.
We didn't actually see him until quite a lot later. He told us that as things are, Alexander will probably have serious problems with his lungs, and may have to be on oxygen for his first year, and he will probably have impaired vision. He didn't actually say, but implied that he was asking whether we wanted to continue treatment! We both feel that it would be a small price to pay. He is trying so hard and doing so well that we feel that he could cope better then most with blindness. He has courage. The night staff call him 'Alexander the Great', because he is such a strong, determined little fighter.
I was in tears most of the afternoon. We rang everyone we could think of to tell them the news and ask them to pray for him.
He's looking much better now. At one point I didn't think we'd still have him tomorrow, but he had another dose of antibiotics, a load of platelets, and is halfway through a transfusion and it looks as if he has a small chance after all. His oxygen levels are better too.
I've been discharged from the ward, and James and I are spending the night in a room in the neonatal unit so that we're here if anything happens. We were told about the rooms some time ago, but I was really hoping that things would never get to the point where we would be offered one.
They say that everything he has wrong with him is something they can deal with, but before they can fix the duct in his heart and treat his lung disease they have to cure the infection. If he survives the next three or four days he'll probably make it.
Today was no improvement on yesterday - in fact it may be worse. One of his lungs is in danger of collapsing and they're having to keep it inflated. I don't know if that's the sort of thing they expect or not.
He had a very good night last night. We went to see him quite early, then went down to the hospital restaurant for breakfast. He was still doing well all morning.
I had to go down to the ward for my last postnatal check, and to collect my discharge notes. When we got back he seemed to be having a crisis. We had to go out and couldn't get back to see him for nearly four hours. Doctor Nicholl came and talked to us, and was fairly reassuring. He said that things were serious, but not hopeless.
Alexander seemed more stable when we went back. James read to him for a long time after tea, but it didn't do as much good as it did yesterday.
Alexander is going to die. He's still alive now, but it's only a matter of time. We were woken up at 3.30 by Rosemund and the Registrar on duty, who came to tell us that he was very ill. His blood pressure had dropped, as well as his oxygen. He was on 100% oxygen and still couldn't keep up. They'd changed his breathing tube and it hadn't made any difference. They were also having trouble with his lines.
We were called in to speak to one of the consultants. He said we have to decide when to take Alexander off the ventilator. At that time it still seemed as if he had a chance, but he made it sound as if we ought to do it right now without waiting to see how things went. We've been feeling really pressured. There's no way we can possibly decide when to take him off - that's like deciding when to kill him. We just can't do that.
We spent the rest of the day watching him. Around mid-morning we had a talk with Dr. Nicholl, who was quite reassuring, but later when they were trying to give him a blood transfusion that he desperately needed his line failed. It was his last line. They've managed to get one more line in through which he's getting morphine, but it's not big enough for the rest of the transfusion.
In the afternoon we were asked if we wanted to hold him. We could only hold him on his mattress, and he was wrapped up well to keep him warm, but it was the most wonderful moment since he was born. I've so badly needed to hold him. I knew that we wouldn't have been allowed to hold him if he hadn't been dying but it was still overwhelmingly wonderful. My arms got cramp from the effort of holding him still so that his breathing tube didn't get moved, but it was really hard to let him go. James held him as well for a long time and then he had to go back in his incubator. I think he knew that he was being held because his oxygen levels got so much better while we had him.
Later we had another talk with Dr Nicholl, who said that if he survived he would be severely brain damaged.
James rang everyone we know and several of the family were able to come and hold a vigil by his incubator. The hospital let them all in although we're not supposed to have more than two visitors at a time.
We don't expect him to last the night.
He's still alive. We got up once during the night to see him and he looked quite good, and this morning he was still stable. The consultant in charge for the weekend came and talked to us. She said that his organs are failing, and even if the antibiotics work he'll still die. She asked us to think seriously about making a decision to take him off the ventilator.
We both held him again this morning and then I held him in the afternoon but James wouldn't. Alexander was getting tired, and I think James was afraid that he would die right then if he was put under the stress of being moved again. It's such a relief to have held him at last. I rocked him and stroked him and he loved it. I can't believe we're about to lose him.
We both feel we can't stand much more of this.
We spent some time during the day trying to sleep a bit, and we managed to eat as well. We've decided that when Alexander's morphine drip fails we'll take him off the ventilator. The morphine should keep him comfortable for about two hours after it fails and if he's still on the ventilator after that he'll be in gradually increasing pain until he dies, and he'd also get dehydrated with no extra fluids.
He's had a really peaceful day and night with no more tests being done, or attempts to put more lines in. We're really glad that he's had that after all he's been through since he was born.
I'm going to miss him dreadfully.
Our baby died this morning
We both feel a lot better than we thought we would.
Jo and the doctor came to our room first thing this morning, just as we were waking up, and said that the morphine drip had failed. We'd been dreading that knock for so long, I knew it was the end as soon as I heard it. I didn't dare answer so James had to. We rang Mummy straight away and then went in to see him. They took the drip out and all the monitors so while they were doing that James rang Lucy and asked her to tell everyone for us.
I held his hand while Jo changed his nappy and made him comfortable, and then she took him off the ventilator. He looked much happier without it. She wrapped him up and gave him to me and I carried him to our room. After a little while James took him. I know he was still alive when James took him because he gave one of those little baby frowns and then raised his eyebrows, but we don't know when he died. It was very quick. I think he was gone when I took him back. He looked very peaceful at last, which comforted us. The fact that he died so quickly without a struggle after fighting so hard for days showed us that he was ready to give up, and we both feel that we did the right thing taking him off the ventilator when we did.
A doctor came in to check him, and then Jo weighed him. She brought in a bath and we washed him and cleaned off all the blood and sticky bits from the drips and plasters. Then we dried him and put on his tiny babygro. He looked really sweet in it although it's much too big. It's for babies between 3 and 5 lbs.
While we were doing that Mummy, Aunty Sandra and Greg turned up, and I went and rang Father Terry to let him know so that he could tell everyone at church. It's strange that at that point I was able to talk. Throughout this horrible experience I've been unable to talk on the phone, and James has had to make all the difficult calls. This morning he was completely beyond talking. A little later Lucy and Rupert turned up, and then Catherine. They all took turns in holding him, and they also found it a strangely comforting experience. We'd all been a bit afraid that it would be horrible.
He was even more beautiful without the ventilator than I thought he would be.
The hospital gave us some cards and an inkpad and we took prints of his hands and feet, and we cut some of his hair and put it in a bag.
Everyone went and bought sandwiches and drinks, which they brought back to our room and we managed to eat a bit, and then we packed up all our things and everyone went with our bags and left us alone with him. We spent the rest of the afternoon alone as a family for the first time.
It was horrible handing him back to the hospital when we left, but they've promised to take good care of him, and we're going back tomorrow to see him again.
I felt really strange when we left. It was the first time I've been outside since all this started. We couldn't just go home so we went to Lucy's and then to Mass at Ealing Abbey. Everything feels unreal and I can't quite believe that we're the same couple who had a baby this morning.
When we got home there were several congratulations cards on the doormat, and James got a speeding ticket for rushing to the hospital the other morning when we first thought Alexander was dying. It made us feel really dreadful.
James had been leaving progress reports on the answering machine every day until he moved into the hospital so we had to change the message. We didn't think it was a good idea to let people find out on the answering machine so we just left a neutral message. I suppose people will know, though.
We woke up earlier than we expected this morning. We're both still finding it surprisingly easy to cope.
We got to the hospital by one o'clock and went straight to our room. Alexander was already there, waiting in an enormous wicker basket. He looked so tiny in it. We spent some time looking at him and talking over yesterday.
Father Peter arrived a little while later and took us to Brent Town Hall, where we registered both Alexander's birth and his death. We got certificates for both, and also the form that enables the undertakers to collect him from hospital. It made us feel a bit better to have him acknowledged officially, especially as we found that if he'd died at birth, as he so nearly did, we couldn't have registered him at all. Since he was born under 24 weeks if he hadn't lived he would have been counted just a "miscarriage", and we wouldn't have officially have had a baby at all. That seems unbelievably awful. We wouldn't have been able to have a proper burial.
We went and sat with Alexander again, and took turns in holding him all afternoon. The doctor came in and asked if we would consider a post-mortem to help with the study. We both hate the thought of him having yet more tests, but we've agreed, because we both hope that in that way his life will have had some meaning outside his family. Losing him will seem easier if we can feel that it might help other babies to live.
We didn't want to leave him again but eventually we had to.
We went out for dinner to save ourselves having to go home and cook, and I had a rare steak because that's something I couldn't eat if I was still pregnant.
We didn't see Alexander at all today, because they were going to do their post-mortem today. I wish we had because I really wanted to hold him again.
Father Terry came round this morning. He was really upset. He brought with him some books of readings.
While he was with us we walked down to J. Worley's and discussed the funeral. They've promised to sort out everything with the hospital, and they said they'd sort out the hospital, too. We really didn't like the coffin they showed us - it was covered in what looked like flock wallpaper - so Father Terry said he'd ask someone in the parish to make one for us. He rang later to say that one of the Gavin brothers is making it. It's going to be plain pine, and I'm going to line it. He said it would be finished tomorrow.
The undertakers also rang later, to say they'd spoken to the cemetery. It is going to be possible to bury Alexander with James'; brothers and Grandfather. There is room in the grave. It's a big relief: I've hated to think of him in a grave all by himself. He's too little to be on his own.
We've decided to ask for donations to the neonatal unit instead of flowers.
We both still find this situation really horrible.
We had a phone call early this morning. The coffin was already finished and at the presbytery.
Ann and Des came round. They only got back this morning. They took us to see the grave. It's in a really nice place, under a big tree.
After that we went to the presbytery and got the coffin. It's really nice. We also discussed the funeral service with Father Terry. Then we brought the coffin home. We stopped at the undertakers to ask about when they wanted it. They said they were actually bringing Alexander back right then.
We took the coffin home, then James and I went into town and bought cotton wool.
I sanded down the coffin because the varnish was quite rough, and then I lined it with cotton wool and the cream silk I bought in Southall for a christening robe. It looks nice - it's almost good enough for our baby.
We've told most people about the funeral now.
We went and collected Ann and Des, and then Mummy and Greg, and went down to the Undertakers with the coffin. When we got there we were shown into the Chapel of Rest where Alexander was.
He was wrapped in a white shawl from the hospital and we left him in that. We wrapped him properly and put him in his coffin. When they did the post-mortem they took his nappy off and it looked as if there was nothing inside his babygro. They had cut his head open and it was all stitched together and looked horrible. When we wrapped him we arranged the shawl so that the scars were hidden. We gave him the tiny teddybear that Miriam gave Mummy. It's just the right size.
Ann was in tears again - it's the first time they've seen him. I couldn't hold him because he didn't look like Alexander any more.
Afterwards James and Des went to the cemetery to talk to the caretaker and Greg drove Mummy and me home.
It's a relief to be with other people - it's difficult being on our own too long because all we want to do is talk about Alexander. It really helps being able to talk about something else for a while.
We got up early today because we wanted to be ready in plenty of time. We went down and collected Alexander from the funeral parlour and drove him to the church. It was our first journey together as a family.
Lots of people were already at the church when we got there. Sonia and Tony came, and Christa, and lots of people from church.
The service was really nice. Des read the first reading and Sr. Theresa read the psalm. Afterwards people came up to say goodbye to him and then we closed the coffin and James put in the screws. Several people, mostly family, had sent flowers after all, and his coffin was surrounded.
We took him up to the cemetery, and this time Mummy and Ann came in the car with us.
After the blessing James and Des put him in the hole. I didn't want to go after that. We covered the coffin with the flowers.
Sean was in tears and so was Mike and several other people but James and I couldn't cry.
We all went to Des and Ann's afterwards. We showed everyone the photos and we all talked about him, and after a while everyone felt much better. We stayed there all evening and had tea there.
When we left and came home Sean came with us. We were going to watch something but we were all too tired.
It was a really sunny day and I felt terrible. I hated leaving Alexander there.
I can't believe he's died. In some ways I can't believe I'm not still pregnant.