There has been a lot written about maternity failures in the press and I have wanted to share our experience with you, but for several weeks I have been too emotional about it to cover this topic but now I feel ready. Every time I hear of mothers and babies who have been failed in their maternity care, lives that have been lost or impacted by disability, my heart misses a beat. We love Joshua dearly, I want to make that clear before I begin, and that should never be in doubt. But he is not the son that we should have had, something went wrong for us which has given him permanent and devastating brain damage. All of our lives have been changed beyond measure by what happened to him at birth and it seems that nobody is responsible.
Joshua had a stroke effectively, either before he was born or during the birth, we do not even know when it happened. He was overdue by two weeks, by the medical profession’s specified due date, and had to be induced. If I could have had that time again, I would have asked to be induced sooner. Who knows what was going on in my womb while he was in there too long. But I did not know any better and we heeded the midwife’s advice, turning up at hospital two weeks later than due. My labour began very quickly and it soon became clear that Joshua was in distress and needed to get out. The doctors wanted to perform an emergency caesarian, and prepared me for surgery, even though my husband pointed out that I had requested a natural birth – I was unable to speak up for myself at this time. We were taken to theatre and I can recall the medics telling me ‘one last big push or else it will be a caesarian’ and so I gave it everything that I had, pushed with all my might, and Joshua was born.
My husband says that they lay him on my chest before taking him away to clean him up and then take him immediately to an incubator, but sadly I have no memory of that at all. My baby was taken away, as he began fitting almost straight away and I was taken to the maternity ward, surrounded by new mothers with their new babies, which seemed especially cruel. It seemed an eternity before the doctors came to see us but when they did , it was not good news. Joshua had continued fitting and they were trying to stabilise him. He was just 6lbs 3 oz and the pediatrician said that he had ‘baggy skin’ which meant that he should have been heavier but that towards the end of my pregnancy the placenta had stopped working and he was not being nourished, and so he lost weight. We called him our ‘skinny rabbit’ when we first saw him as he seemed so long and slim.
There followed a tortuous day with infrequent updates and in the afternoon, the doctors told us that he was being transferred by ambulance to another hospital across the city, which had the Special Care facilities that our hospital did not have. It took several attempts to get him stable enough to move but they managed it around teatime and I travelled separately in another ambulance in my nightie, anorak and boots. We were finally able to see him that night, once he was established in SCBU, which was a major relief and I stayed up all night next to him, terrified, as the monitors were going off all the time.
The medical profession must have suspected that he had had a stroke, but did not share that with us until after he had a MRI scan at day 4 of his life. The consultant came to my bedside to ask where my husband was and I explained that he was visiting later, but he was at home with my parents when she arrived. She then proceeded to tell me, alone, that Joshua had suffered a stroke and had severe brain damage. I could not take the news in properly in my exhausted, emotional state. Our kind nurse, Katie I recall, telephoned my husband and asked him to come in earlier than planned, simply saying ‘Your wife needs you’ as I was too tearful to explain. Katie and I tried to tell him and my parents what the Doctor had told me, but of course we could not answer his many questions but the consultant had disappeared to an emergency by then and could not be found. That was one of the cruelest and least sensitive decisions that the doctors made in my opinion and that feeling of loneliness and disbelief will never leave me.
Katie managed to find another consultant to explain again and we had lots of questions for him and even more the following day. That night they let both of us stay together overnight in the Parents Room, as previously my husband had been going home every night and that travelling, although it was only 30 minutes away, was exhausting as anyone who has ever done regular hospital visiting will know. We were given more information and Joshua gradually stabilised so that he did not need to be monitored so closely, as he mastered the art of breathing consistently, so we were moved together into a room with him in a cot in my bedroom, where we were looked after really well by the SCBU staff. In total we stayed 11 days in Special Care before being discharged home. The prospect of going home, though appealing, was also terrifying after having had 24 hour care for professional pediatric special care nurses. But we faced it and we had no emergencies and we are here to tell the tale.
Once Joshua was growing and stable, we asked the NHS to review our file to try to understand WHY what had happened , had happened. Was there any medical negligence at play? Should we have done anything differently. We had blood tests to see if it was our combination of blood cells that might have combined to cause Joshua, and any future offspring, a problem. The doctors got very excited at first as they thought that they had found a problem, but it turned out to be a mistake. It was notable that the NHS defends its own staff and they protected each other so much so that not the midwife, nor the staff in the delivery suite could be blamed for anything. We were told to go away and realise that what had happened was ” Just one of those things”. Now for the sake of Joshua and for my own well being, we have accepted that, but it has not been easy and these negligence cases, each time raise the issue in my mind again. We were never looking for a bumper payout from the NHS, we simply wanted to understand what had gone wrong for our son and to appreciate if it might happen again to any future babies that we might go on to have. It does not seem unreasonable to have sought that reassurance, but for us, it was not to be.