Anne and I were so happy when we first found out she was pregnant, we hugged and kissed and danced around the house. At first everything was fine, Anne wasn’t sick, she felt tired but was coping well, we went to the hospital together for her first scan which was great, there is something almost magical about seeing your baby move, the little heart beating, the right number of arms and legs. On the way home we talked about how reassuring it was that everything was alright, how wrong we were.
During February and March the problems began, Anne’s blood pressure started to rise and she was retaining fluid, the doctor said that she should just try to take it easy, I insisted that she take a week off work after reading how dangerous Pre-eclampsia (Pregnancy induced hypertension) could be. On March 28th we went to the doctors together, we were worried that the baby hadn’t been moving as much. The doctor with his usual bland “oh I’m sure everything will be fine”, attitude sent us to the hospital to be scanned and monitored as her blood pressure was also very high. The midwife’s initial response was that the baby was not 31 weeks, what was she talking about? We knew Anne’s dates were correct, she must have got it wrong. The monitoring was O.K. but we were told that because of her high blood pressure Anne would probably have to stay in hospital for the rest of her pregnancy and that they would do a scan later that afternoon. When we went for the scan they kept saying that the baby was only about 26 weeks, what did they mean? I didn’t understand, Anne got very upset when the operator said “and what have you been doing”, an innocent remark but one which worried Anne intensely, what had she been doing, had she harmed the baby? Back up on the Labour ward they explained, clearly, the problems, the high blood pressure had prevented the baby from growing normally and he had only developed to an equivalent age of about 26-28 weeks instead of the 31 weeks we knew him to be. They would transfer Anne to St Georges Hospital at Tooting, they did not want to deliver the baby at Redhill as they did not have the resources to look after a very tiny baby. Anne was put back on the monitor and we sat and watched the reassuring trace. Suddenly it dropped right down, we didn’t worry to much as this had happened before when the belts moved a little and with some adjustment everything would be back to normal, this time however it stayed low, the doctor appeared and said that they would have to do an emergency ceasarian. I got very worried and confused, “surely you just said that you didn’t want to deliver the baby here”, “If we don’t then the baby might die” was the answer. Within minutes Anne was prepped and in the theatre, I think that was the worst moment for me, seeing Anne wheeled in with that frightened, confused face and being left outside, alone unable to help. My son was delivered just before 6 o’clock and was taken straight upstairs to the Special Care Baby Unit, I went to see him a few minutes later, he seemed so small, not much bigger than my hand, all around me machines were bleeping and buzzing, I touched him, my son, a wave of emotion swept over me. I couldn’t control it, the tears and despair, this wasn’t how it was supposed to be, it was like a nightmare, this sort of thing happened to other people, people who didn’t look after themselves, people who didn’t care, not us.
The nurse and I took some polaroid photographs, I went back to see Anne, she looked pale and fragile, after a while she started to come round, her first words were to ask how the baby was, I told her we had a son, she cried, she kept saying he’s going to die. I had to try and convince her that things were alright even though the same thoughts kept jumping into my head. Anne was very sleepy so I went back to the SCBU, the nurses were great, they explained what everything was doing and encouraged me to stroke the baby. Just as I was about to leave he opened one eye and looked straight at me, my heart turned over, it gave me great faith in his abilities. The consultant explained that they couldn’t look after him at Redhill for more than a few hours as they didn’t have the resources, he was on the telephone trying to find a hospital with a Neonatal unit that could take him, eventually they found room at the Westminster Children’s Hospital, he would be transferred during the night. I went home and spent a sleepless night reading and re-reading all the baby books to try and find out everything I could, I needed to try and find a reason why it had happened.
The next morning I got to the hospital to find Anne in a fairly buoyant mood, we looked at the photographs and decided that I should go up to London to see our son we also decided to call him Drew Alexander, it was the only boys name that we had both agreed on, we found out that it was derived from a German name meaning strength, so that settled it, I went and registered his birth, for me, this was an act of faith for him. On the train to London and whilst I was walking round to the hospital I kept being overcome with emotion, I would think of Drew and tears would well up and my stomach churn. I walked down the corridor to the Neonatal unit, I still see that long, long corridor in my dreams, and suddenly there he was, tiny, naked, strapped up with wires and tubes, looking so vulnerable, I cracked, I just couldn’t stop crying.
When I had calmed down, Tracy, the nurse who was looking after Drew, explained all the machines and alarms to me again, she told me that Drew was doing well and that a doctor would come and talk to me soon. After the doctor had talked to me they had to draw off some of Drew’s blood to check the oxygenation level, that first time they did it I wanted to tell the doctor to be more careful but taking blood from a vein the size of a strand of cotton is difficult even when you only need a couple of drops, in the next few days after I had seen the procedure done a few times I realised that they were always as careful as possible. l took a load of photographs and then went for a walk to get them developed, the Neonatal unit was very hot, the babies are all naked to enable the nurses and doctors to care for them easily, I felt drained after a couple of hours. Later I went back and I just sat holding Drews hand and stroking him, he opened his eyes a few more times but he seemed very tired, I started to get used to the hissing rhythm of the ventilator and the buzzing of alarms going off. I left and caught the train home, I sat and looked at the photos, it seemed unreal that the rest of the world was carrying on its daily business not knowing about Drew, I wanted someone to see the photographs and say something to me, no one did though. I took the photographs in to show Anne, I think it was a bit of a shock to her as they showed how small he actually was, I did my best to cheer her up but she was upset that she had not had a chance to see Drew before he was transferred. Later I went home and started phoning friends and relatives to tell them what had happened, people react in different ways but there was always the same comment, “Oh they can do marvels these days,” I suppose they didn’t know what else to say.
The next few days blurred together, as a routine was established, visit Anne in the morning, visit Drew in the afternoon, back to see Anne in the evening then home to phone round the days report. I borrowed a video camera and took some film of Drew, Anne still hadn’t seen him after 5 days in hospital so although it upset her when she watched the tape it gave her some idea of what things were like.
Eventually they let Anne out for the day, we drove up to London and got to the hospital, Anne found everything very difficult, I’d started to get used to how Drew looked but it was all new for her. The staff were great they got Drew out of the cot and Anne was able to hold him, he was still attached to all his wires and tubes but Anne could hold her son at last, it was a great moment.
The most difficult thing with a premature baby is the swings that occur from day to day, one day everything looks promising and you start to have hope for the future, the next day something goes wrong and despair sets in. The doctors always give you the worst diagnosis to every little problem, this keeps your hopes in check but can cause unnecessary worries. Drew was now getting most of his nutrition through a long line, a tiny tube which entered his leg and finished near his heart. He was being given TPN, total parental nutrition, which was made up every day and contained all the proteins, fats and vitamins he needed, they would then analyse his blood and vary the amounts required for the next day. Drew’s weight varied a fair bit, he weighed 1lb 13ozs when he was born and after an initial drop it gradually climbed until after 4 weeks he was up to almost 3lbs. The care in a neonatal unit is very intrusive, no sooner had they finished one procedure than they seemed to be starting another, there was not a lot we could do but we were encouraged to clean him and oil his skin, the babies get very dry under the heaters and UV lights. Sundays were best as not so much was done and there was more quiet time for us with him. Drew’s stomach became very distended and tender, there were a lot of different suggestions but no real answers. After 4 weeks Drew was doing well, he was breathing on his own in a head box, this provides an oxygen rich atmosphere, when suddenly he got pneumonia. The situation got worse very quickly and we were warned to expect the worst, he rallied and seemed to get a little better but with such small babies one problem can trigger off a number of other problems. On the 30th of April when I got to the hospital they told me that they had rung Anne and she was on her way, they felt that we needed to be there. Anne arrived with my sister who had given her a lift, we were told that they did not expect him to last a lot longer, had we thought about getting our parents to come and see him? We had always resisted allowing “visitors” to come to the hospital, apart from anything else we knew what a shock it was to see such a small baby with all the equipment and wires attached, was this the way we wanted people to remember him? Eventually we rang my parents and gave them the choice, they came to see him, my mum was crying and I think my dad wanted to as well but couldn’t. After they had seen him we went for a walk, again I experienced a sense of unreality, people were going about their normal lives whilst my baby son was dying. When we went back to the hospital, the doctors were trying to do everything they could think of but eventually they came and told us what we already knew, that Drew was dying, they asked if they could just keep him comfortable and we agreed.
It was a long night, Anne and I stayed in a room at the end of that long corridor and cuddled together on a narrow bed taking it in turns to cry and doze. At about 4am I walked down again to see how he was, I could see straight away that all the monitors and levels were very low but he seemed peaceful enough, I sat and stroked his hand for a while, I tried to tell him how much I loved him, how important he was to us, how he would always be special to me and how proud I was of him. At about 5.30am the nurse came to fetch us, he was going fast, we decided that we wanted to hold him without all the wires and tubes, carefully they disconnected everything and we held him, he took a couple of more breaths and at 6 o’clock on the 1st of May he died in Anne’s arms.
We held him for a long time and then we took him back to the room were had stayed in, all the nurses and doctors came to see us and tell us how sorry they were, one of the nurses said “We’re not supposed to cry, but we do.” I held him up to the window, he had never been able to really see the world. Tracy, the nurse who was looking after him that first day, came to look after us. There were various formalities to go through, I had to register his death in London within the next 7 days, I decided that I would do it there and then, the hospital arranged for a car to take me up to the Euston road, I waited about 30 minutes for the car to arrive and when the driver said “it’s lovely weather today”, I snapped back, ” Yes you don’t expect people to die on a nice day,” which wasn’t very fair of me I suppose. At the registry office all I could think of was that I was sorry for the poor girl who had to deal with me and what a rotten job it must be. When I got back to the hospital Anne and Tracy had given Drew a bath and dressed him, Anne said she felt that at last she had been able to do something for him, I really regret not being there with her. Eventually we had to leave and go home, it was a strange day, so many different emotions, we rang all our close friends and family and arranged the funeral. Peter, the hospital chaplain, had offered to take the service and he suggested having a burial, something I was very unsure about, Anne wanted to so I agreed. We went up to the cemetery, the superintendent was really helpful, he showed us the children’s section and said we could pick a plot almost wherever we liked, we chose a spot at the top of the hill, I was really worried that we would have to take “the next one in line” but it wasn’t like that, Peter was the same, he encouraged us to think carefully about the service we wanted and, in his words, he would “keep the God stuff to a minimum”. We used some poems we had found, “The Wind” by A.A.Milne and another about A Lily of the Day by Ben Johnson, something else we both did was to write Drew a letter which we put in the coffin, it was a good way of saying things that maybe wouldn’t make sense if you said them out loud. We went to order the flowers and had an unfortunate experience with the girl in the florists, we wanted to have white lilies but she couldn’t understand that I wouldn’t pick an arrangement from the book, I wanted something special for Drew, I wanted someone to make an extra effort for my son, Anne got upset with me for making a fuss but fortunately the manager understood what I meant, we had a similar experience when we went to order the headstone.
When the day came the weather was wonderful, it was sunny and dry, something that was important to us as we wanted to have the service outside. I cut some flowers from the garden, the funeral director came to pick us up and I carried Drew into the house for a few moments, he’d never come home with us properly. I carried the tiny white coffin up to the grave, the hole seemed huge, it was the focus of everyone there. The service was very moving and memorable, there were lots of dear friends and family as well as nurses from the hospital and work colleagues, it helped us a lot. After everything was over there was a strange vague feeling which took a long time to go, this was combined with bursts of intense sadness, I still get these 2 years later, it seemed strange that I couldn’t even visit the hospital to sit and talk to Drew, or stroke his hand. Things that other people got worked up about suddenly seemed very unimportant. The feelings don’t really go away but they get easier to deal with.
Elinor was born on the 20th of July 1991, Anne had a lot of problems with Pre-eclampsia again and ended up spending about 5 weeks in hospital. Just after she was born as I held her for the first time she wriggled in my arms, so strong and full of life, so different from the last baby I’d held, I fell in love with her then and it still feels the same everyday I see her.
When I hold her up to look out of a window I always think of Drew and think what might have been.
Chris Hoskins – Drew’s Dad 15/5/92
As you can see I wrote this in 1992, since then Anne and I have gone on to have another daughter, Jessica. The girls are now aged 7 and 5, Anne has trained to become a Sands befriender and helps other bereaved parents through the first difficult year or so. I have been producing and edited the Newsletter and I served as Chairman of Surrey Sands for a year.
Sands has been a lifeline for us, it was just so important to be able to talk to someone else who had lost their baby. Through Sands we have made friends we would never have known. There is a “secret club” of bereaved parents who exist in a silent shadowy world of deception every time they are asked, “And how many childeren do you have?”