This time of year is filled with utter joy and a wee bit of sadness. Five years ago our life changed forever as it does with so many couples expecting the birth of a perfect new baby.
I was so excited about meeting your new baby, we didn’t know what we were having, and just couldn’t wait for the day to come, I had followed the books and was the ‘perfect’ host, not eating or drinking anything naughty, doing all the exercises, did the nct course and was even giving massage and hypnobirthing a go. I’d done my birth plan but really didn’t mind what happened as long as the baby actually came out because I couldn’t stand being a beached whale for any longer.
The night arrived (8 days late, grrr) and I had had several bouts of false labour so really I was convinced I just had trapped wind and wasn’t in labour, I didn’t think the baby would ever shift. But after trying a bath and some Rennie we gave the hospital a ring and went in. It was strange as I didn’t have the tummy cramps, I, lucky me, had all the pain in my back and from the word go the pain was full on it didn’t get closer together the nearer I was, it didn’t get worse, it was just 24 hours of contractions no rests or breaks. It had begun….
After the birth I wrote everything down that had happened and how I felt and I was looking for it this week, I’ve not seen it since the day I wrote it because I just couldn’t and now I felt it was time to do that but alas it has gone. So this is my account, in a vauge way hoping it is theraputic to get it out of my system but also in the vain hope it may help others that find themseves in that same place.
I was very determined to do it all by myself, the labour, and not use pain relief, god knows why, but I wanted to do something I could feel proud of and make my mum proud of, it was a deep need. I’d always felt a bit f a failure at life in general and in the eyes of my parents and thought this would show them I was OK. The labour was intense but very well managed by myself and the midwives, my husband was some for of god, making me laugh (saying I was like Darth ‘Labour’ with the breathing into the gas and air. Death stares from the midwives ensued but it made me laugh). 24 hours of ’fun’ later and after being prepared for a vontouse Arthur appeared, he obviously didn’t like the idea of the skin unblock-er coming to get him so he popped out before anything needed to be done.
I had done it, a natural birth, just a bit of music and some essential oils, a whole load of noise and he was here.
I knew he was going to be a boy. I just had a feeling, and he was always going to be called Arthur after my wonderful grandpa. So my little Arthur was laid on me whilst I trembled in disbelief. And then all hell brought lose.
Arthur has taken to the table beside me with Simon in between us. Arthur wasn’t breathing, he had had the cord around his neck and had swallowed a huge amount of meconium, a dangerous amount, what would normally at the time have been a fatal amount. And while I had to give birth to the placenta my son was lying blue and lifeless on a table next to us while the doctors worked to save him.
My only memory was screaming ‘please don’t let my baby die’ again and again. I knew what it all meant because something very horrible had happened to a work colleague only a month before. His baby was born under the same conditions and so much tar like mechonium had got into her lungs that they just couldn’t get it all out and their dreams were all crushed. So after that tragedy, I had asked all the midwives questions about this situation and was told it was so rare it would not happen to me and it was out of anyone’s control anyway, fate, rubbish, shitty, fate. It’s all so vivid in my head, time doesn’t dull the memory or the pain or the damage. And I wasn’t poor Simon, he was watching his son lifeless on one table and on his other side his wife was screaming, and going into shock whilst still dealing with the third stage of labour.
Anyway, somehow these doctors got the tar out of Arthur’s lungs. The midwives later told me that the doctors had used a new resuscitation technique they’d never seen before. They had performed miracles and saved my baby. I just thought if they can do that everything will definately be ok., I mean come he had totally cheated death. The doctors took him to the nursery and I was left to ‘clean up’ have some toast and a cup of tea. The nursery sounded nice, ahhh he’d be all snuggled up waiting for me to give him a proper cuddle. I didn’t know or understand that the nursery was neonatal intensive care.
I was popped into a wheelchair at last, we were kept waiting for ages I just wanted to see Arthur, then I saw the ward sign…..then I realised something wasn’t quite right, there was silence other than beeping monitors and buzzing machines, people were watching us, it was 3/4am and the ward was empty of anyone other than the staff. Then we were taken to his area. He was in an incubator and was covered with tubes, his face blanked out by a ventilator and a little knitted cap that kept the tubes in the right place. We could touch him briefly through a hole in the side. Then they explained what had happened.
Arthur, once resuscitated had been brought to intensive care and on the way he suffered a huge seizure, probably due to the lack of oxygen to the brain whilst being worked on for such a long time. This had caused massive damage, many of his organs weren’t working but most importantly he had suffered brain damage. No one knew how extensive it was yet, but it was big, it was serious. We were then left alone with him and to make the phone calls. Phone calls to tell nearest and dearest to come as soon as they could because otherwise they night not see him. I don’t think anyone but the staff and Simon and I understood quite how bad it was, we knew what had happened previously and the likelihood that the machines would be turned off was high.
It was all a bit surreal, like you were watching someone else’s life, it couldn’t be happening. When we went to see Arthur a few hours later, after trying in vein to rest, he had come out of an incubator and was now on what essentially a cooling table, and had been placed on a medical trial which was hoping that by cooling his whole body to slow down that the rest of his organs his energy would go into healing his brain. I’d rather not think of all the things that weren’t working because they were the least of his problems if the brain didn’t respond.
The wires were terrifying, one went into his head to monitor stuff, he had a feeding tube, drips etc etc etc. We could touch him but not stroke him as that could upset his senses, we still didn’t even know what he looked like. Didn’t know what colour all that gorgeous hair was as it was still thick with the meconium.
Days went by and going to see him terrified me, I was with drawing quickly. I didn’t want to go because I was scared he might not be there, he may have gone, all we felt was huge pain and grief and confusion. We were grieving for a life that we thought would happen that had gone. Our son hadn’t died but the baby I had had inside me had gone somehow and a new one was lying there now. A new one that I needed so badly I thought I would explode. He couldn’t die, he’d never get to feel my hugs, he’d never see us, know us, love us, he’d never know the seaside, feeding the ducks, breath fresh air, blow out a candle on a birthday cake, hold our hand, be swung with laughter in the air and caught by his daddy with the safest arms. But the most important thing of all was he would never know, really properly truly know how much I loved him, unconditionally, instantly, all consumingly. That was terrifying. Those first few days I was preparing myself for his death, every moment waiting for the words.
Living in the hospital, which both Simon and I did, was strange. I was still a patient as they knew my history with depression and they must have felt I needed observing. Simon was allowed to stay with me and sleep on a reclining chair they wheeled in from a visitors room. We had a side room on the maternity ward away from the mothers who had there babies, but I could still hear them crying every night, those lucky mothers and there crying babies.
Simon spent a lot of time by Arthur’s bedside, reading to him, speaking with the doctors and understanding all the medications, the latest hourly procedures. He did ‘cares’ mainly I was just to frightened(‘cares’ is where you change your babies nappies, wipe the eyes and mouths with sterilised water). There were so many wires, he was so little, although he was a giant almongst the prem babies that were mainly there, what if I did even more damage. And those noises, the beeping of the machines, there was nowhere to sit apart from two bar stool type things. After ten minutes you felt like you’d been there for hours. Time didn’t mean anything, we forgot when we were meant to eat so we missed meals and when we got hungry the shops had closed, nothing really made sense and we became institutionalised very quickly. The outside world and what was happening meant nothing.
I went in and out of shock, Simon was there always. We would sit and talk for hours about everything, we stayed strong because he was strong. That kept us together we experienced everything as a team, it was Arthur, Simon and me against the world.
At the end of the first week we sat with one of the main doctors and spoke to him about our fears. It was the first time we were told he was unlikely to die. Then we could breath again. Pretty amazing Doctor really, how many people can tell the parents of a ill child that there child is exceedingly ill with life changing implications but you leave the room feeling happy, excited and positive. Things started to get a bit easier, I wasn’t afraid of every knock on the door any more. I was going to do everything I could to make my son better. Even when I was discharged and had to leave him there, which nearly killed me, I knew we would be together soon. We had to be I wouldn’t allow any other option to enter my head.
There are moments when you go through this sort of thing that you can’t explain to people that are lucky enough to have typical experiences. Things that are easy to take for granted that we celebrated and made us bond with our son more than is humanly possible to explain. The night he had his ventilator taken out and we saw what our son actually looked like. The first time we got to hold him, feel how warm and soft he was. Hearing him cry for the first time, his perfect little voice. I could write a book about those tiny things that made us want to carry on each day. Finding he had a sucking reflex so he may be able t feed with out a tube one day. To be honest I thought it would be easy to write this down and explain what happened. But it isn’t, and I don’t think I can properly. After five years it’s just as raw and painful and vivid.
Needless to say my boy lived, he left hospital, and we have enjoyed every single second of his life, we have celebrated every achievement. He has done everything that wasn’t expected. He sat up, he rolled over, he held an object, he ate food, he walked, he recognised us. He was a bloody miracle. Not one moment of Arthur’s life hasn’t been cherished and loved and wanted and remembered. Many children don’t get to leave that ward and we knew some of them and we will never forget them.
Arthur has brain damage, we have recently found out the complex needs he does have and that mentally there are more issues that we realised going on. Life is different for us than for my other friends and family. But that little boy we have is braver and more determined than anyone I know. He is why I will never give up with anything. He is why I’m a better mother than I could have ever dreamed of being. He makes me a better person. And he sister shows me the same strength and power of character that makes me the proudest person alive. My little family, Simon Arthur and Phoebe. It’s not about the devastating things that happen to us all, it’s about how we deal with them.
Arthur’s brain is damaged, it won’t get better, what’s done is done. He may look ‘normal’ but that is because every second of every day he is working 500% to be like us. Every day from waking up he has to think about how to move his body to stop accidents happening and keep himself safe, he has to think of a way to communicate with everyone because he has limited speech, he gets tired very easily but he doesn’t know how to sleep without medication. He has epilepsy. He has behavioural issues and probable learning difficulties. He had complex sensory issues. He is constantly misunderstood and talked over. And we have so much more to learn about his needs. But yet he smiles, he laughs to most fantastic giggle you will ever hear, he is kind and so loving and is happy. He rarely complains. He is NOT naughty, he is brave and to be admired. He is a miracle and those people who stare and tut at him when he is frightened and out of control, I pity you because you don’t have an Arthur is your life to make you a better person too.
Writing this has been incredible hard and I’ve avoided going into too much details, but for months I have been having vivid flash backs and finding life difficult. I think I needed to remind myself how wonderful things are and how far we’ve come. The difficulties won’t end but thank god we have them I wouldn’t swap them because then I wouldn’t have him. xxx




























































































