Miranda's story

Little BABY JACK

My name is Miranda, married to Peter and we live in Uganda, not the most normal of places to live, but we love it. Green, lush, warm and Ugandan’s are the friendliest nation of people you would ever like to meet. The perfect place to have children, we have lived here for 10 years now.

I have a gorgeous little girl (Katie now 5, but was nearly 3 at the time of my second pregnancy) Katie was born five weeks early and left hospital in Kingston with no problems. After her birth my blood pressure went through the roof very badly and I had to stay in hospital, until they could control it with medication. At the time nobody talked about HELLP Syndrome and it was assumed that I had Pre-eclampsia. Katie and I went home 6 days after her birth and my blood pressure was normal again after 6 weeks.

We decided to try for baby number two and it took us a year to fall pregnant. I flew back to London for my 12-week and 23-week scan and check-ups in January 2001. Everything was fine and there were no problems. As with Katie all I suffered with was acute pains in my chest, but this was put down to indigestion. I have a really low blood pressure normally and it was fine during those first 23 weeks.

We were also told that we were having a little boy and we were over the moon. Jack - he was always going to be Jack.

I returned to Uganda after my father’s funeral. Sadly he died on News Years day 2000!!. I didn’t really feel right from then on. I just thought I was not very good at being pregnant. I was extremely tired, exhausted really. I had no headaches or other signs, apart from little weight gain and fluid in my face and the chest pain, but I had done with Katie and didn’t connect anything. After spending three weeks trying to pick myself up and after driving my husband and friends mad with my lack of life and moods, I finally decided to go to the Doctors and have a check-up. I was 26 weeks pregnant.

What happened next is really quite bizarre and still to this day it does not seem real to me. My Doctor took one look at me and referred me to a specialist in Kampala, he took another look at me and nearly fainted when he read my blood pressure - I was 190/140. This was at 12.00 noon on a Saturday. By 6pm I was in a special air ambulance being transferred to Nairobi -Kenya, thank heavens for BUPA and evacuation cover. There I was stabilised for three days and flown straight back to London. All through this trauma Peter and I believed this was just a blip and I would be fine once in the UK.

In London I went straight to the Fetal Research Centre in Devonshire Place where I was told outright that we were playing Russian Roulette. Either Jack would die, I would die or we both would die. I was then admitted into Kingston Hospital and monitored every minute of the day. Mr. Morris my obstetrician was marvellous and kept me calm, he is quite the most amazing man. I had jabs of steroids to strengthen Jacks lungs and was told that there I would lie until things became so precarious; Jack and I would have to part ways.

My mum and I thought everyone was being dramatic and it would all be OK. We were so naïve. I can’t really imagine how Peter felt in Uganda with Katie and not being able to do anything for me in London.

On the Saturday morning everything went topsy turvy. I was told Jack was in danger and my pressure was now 210/156 - on medication! Luckily, as I was being wheeled away for my caesarean in a complete daze, my husband arrived straight from the airport with my little girl. Oh to see them both was amazing and I cried and cried.

My poor mother was in complete shock - as we all were.

Peter was a star and kept apologizing for not paying me more attention and not listening to my moans about feeling unwell.

Peter and I went down to surgery where they wheeled in a trolley for Jack with the neonatal paediatricians and my Doctor. Peter missed Katie’s birth but was very much there for Jack’s, he held my hand and we chatted about things that were trivial, both not trying to look at my stomach, both seeing all the tugging and pulling. Both looking over to the cot to see how Jack was, but not seeing anything, as there were too many people in the way.

Jack was born at 10.37am on February the 5th 2000 - weighing a tiny 1.5oz’s. I could hear him bleat when he was on the baby trolley and was then he was whisked away by the medical team. I was sown up and returned to my room. I was brought photos of Jack, until I could see him the following day. Jack was delivered in the sack, which was the most stress free birth he could have had. I thank Mr Morris for that.

I was very ill for the next 6 days with pressures of upto 226/156 before my body recovered. It was after I had recovered that I was first told about HELLP and just how ill I was. Mr Morris knowing me well, didn’t inform me of how ill I was for fear of me going into complete shock, he is such an amazing calm man. Over those first three days, I was not really on this planet and I felt ghastly, every time I tried to stand up my blood pressure would go mad and then I would fain or pass out. Peter would wheel me down to see Jack and there I would just sit and cry. Touching him was marvellous, but the world just didn’t seem real anymore. I am a lively chatty, positive person, but that part of me seemed to vanish for the next week or so.

Both Peter and I were in shock. How could anything so small survive? But survive he did, come infection, Pulmonary surgery in the Brompton Hospital, come hell and high water he survived. I spent the next 11 weeks living around his incubator loving him with a helpless passion. The day he came of the ventilator and went onto to C -pap was sheer joy. He was just so cute with a mass of red hair the doctors would joke about. Just like his big sister had when she was born.

The Doctors worked on Jack and the nurses worked on me. The team of staff were amazing I cannot even begin to describe how fantastic they all were.

After the first two weeks of roller coaster emotions with Jack’s health and midnight phone calls saying Jack wasn’t going to make it. Jack calmed down and so did we. We had a perfect little order to our day – dealing with Katie, living at my Mum’s, visiting Jack two - three times a day. Jack flourished gained weight and could come out and be held by me. The first time I held him, he had his first shower, as I cried all over him. If Jack had a good day, so did I. If Jack had a bad day so did I.

When Jack was five weeks old Peter flew home to Uganda and I remained in the UK with my perfect family. Katie and Jack. Katie was involved all the way with Jack and would help me change his nappies and look after him. We stayed with my Mother who was a star, coping with my father’s death and nearly that of her daughter and Grandson. We had to find a new school for Katie and keep her occupied, as she was away from her own home, toys and friends. She coped brilliantly. I was by now desperately home sick and knew that it would be months, maybe years before I would be able to bring Jack to this lovely Country. It was very hard to deal with. But we did it with smiles and laughter with those fantastic nurses. I also cried for many hours down the phone to Peter and on my own at night. I kept thinking it’s not meant to be like this.

I also tried not to think about Jacks long-term prognosis. He had passed all his tests, eyes, brain etc. But would he be normal? Everybody seemed to think so. I was confident that Jack could overcome anything, but also very worried and depressed at times with it all. Tests after test. Not knowing whether you would have handicaps to face or not. It was the not knowing that was the killer. It is very easy for a Doctor to say you will have an answer to that question when he is two! Two seemed a long way away.

Peter returned on Saturday the 17th April 2000 to visit us and see his now enormous baby who had doubled in weight. We arrived at the hospital and I just couldn’t wait to show Jack to Peter. However, Jack was incredibly ill. Just like that. Fine the evening before and by 9am the next day so ill, ill, ill.

As the Doctors were working on Jack and re-ventilating him, we were taken into the room I considered being the room of gloom. All parents, who were taken into that room, always came out in tears and the entire neonatal department would become hushed and quiet for a few hours. Upto then I had considered myself so lucky for never having to set foot into that room. My beautiful bright boy had never been ill enough. Apart from bad lungs he had a great brain, eyes and ears. He could grow new lungs with time. He was just so bright and alert all the time, naughty as hell. Just so beautiful and perfect. However, we were told that they didn’t think Jack would make it and to prepare ourselves. We also left that room in tears.

For the next few days, as always, that plucky little boy persevered and continued to get better, surprising everyone. I was losing the plot and couldn’t believe we were back at square one with the ventilator again. I have never experienced depression like it. Life seemed so hopeless. I wanted to runaway, hide anything but to go over all those same hurdles again. I quizzed the Doctors and asked loads of questions, which I had never done before, I wanted answers, guarantees, of course there were none. But those doctors didn’t seem to think my behavior abnormal, quite the opposite, they were brilliant, they tried to reassure me, we tried to make decisions. They said all of my emotions of total panic were normal. I didn’t feel normal. I couldn’t believe that my organised life was out of my hands. I just felt guilt at my mixed emotions.

Sadly on April the 20th Jack died of pneumonia because of premature lungs. It was such a shock, he had done so well. I had spoken to one of the nurses the night before. I used to phone and see how Jack was doing before I went to bed. Charlie was her name - she said I sounded so much more positive and I said that I couldn’t and wouldn’t give up on Jack. Somehow, no matter how awful, we would get through this as a family.

Peter and I rushed to the hospital and I think we both knew this was the end. It was weird answering the Taxi drivers questions, it was all a blur.

We arrived at the hospital and were taken back into the famous room. Jacks lungs were hopeless; he was ventilated, but still couldn’t get the correct amount of oxygen into his system. We made the appalling decision to turn his machine off. I didn’t want him to die in an incubator and as a Mother I just needed him in my arms. Peter felt he couldn’t make that decision and said it was mine to make. I couldn’t make it without his agreement. The Doctors told us they could see absolutely no hope. The decision was made. Jack was allowed to die on me with his daddy with him too. I was so proud of Peter. As a mother I think you can cope with so much as a father I think it is harder. At this point I even felt relief that there was an end in sight and Jack would never be pricked again, paralysed – that was always the worst for me, prodded and hurt. He was to be at peace.

Finally I had my little boy in my arms, with no noise and no machines, no wires and no monitors to alarm as soon as you moved. It was bliss. There he died over his mother’s heart while I tried to cover every topic that a parent should do with their children. I sung him nursery rhymes, described his beautiful home in Kampala, and told him how Katie wanted to share all her toys with him, I told him everything. After an hour he died with Peter and I just telling him - how much we loved him. Oh how we cried.

I can’t really describe the next few hours, days and weeks. My Mum and my family were marvellous; my friends in Uganda helped me through, the nurses and Doctors and head of the charity Born too soon – Pauline were all-incredible. My family and best friends were invaluable. Peter and I were just numb, shattered and exhausted. Katie had to be cared for and she really saved us all, no question about it.

We had a funeral in the UK for just the nurses and close family and then a huge memorial in Uganda that was truly the most amazing service ever. We had an enormous photo of Jack in the middle of the church with his teddy bear. There were 250 of our friends all crying and yet all coming away from the service feeling they knew Jack. That is what we wanted.

He only lived for 11 weeks and five days. But he touched everyone. They were the best and worst of my life. HELLP Syndrome is not the problem here, you never really believe you are going to die – I didn’t. HELLP is all about the baby. How can our bodies do this to our own children?

I need to find out more about HELLP, but I don’t feel I can ever chance pregnancy again. I know I don’t value my life, as much as I did Jack’s. And I could never love another soul as much as I did him. I also could never risk leaving my husband and our perfect daughter on their own. Everything in life is for a reason and that is all I can hang onto for the moment.

Miranda