There is a song called Talk Show Host that is one of nearly 200 sitting on my HTC mobile phone. The start of it seems to have me figured out just right today. I can’t remember who it’s by without going to look and I’m not getting up right now. These are the words….
I want to
I want to be someone else or I’ll explode….
I spent last night tossing and turning as my mind struggled to come to terms with life, with the events of the day and the realisation that I can’t keep living in denial. I am not going to have perfect and, it’s about time I woke up and smelt the fucking coffee and accepted things are gonna happen sooner rather than later….
I’m going to start with a story of life and things that happened 11 odd years ago. I don’t usually do this, in fact most people that know us as a family have no idea that we live with a child who is ill. Yup the reason I’ve spent the last week stressing and the last 4 days living on apple juice is my son. I’m gonna write this down because maybe it will help me a little…. I hope…. Deep breath here goes….
My partner had been out of prison for just over a week when I fell pregnant, we’d been at it like rabbits and the obvious happened, it wasn’t planned but we were happy. We had 2 children and another child would be loved just as much. I always wanted a big family of my own.
I went for a dating scan and was about 12 weeks pregnant, the midwife at the hospital asked if I wanted the anomaly scan, you know the one they check for defects? I said yes but no to the triple test. I’m going to love a baby even if it has downs or other….
At about 18 weeks, I’m sitting in the waiting room oh so happy. My other half is sat in the car with our 2 children. I expected to be about 20 mins, if that. The midwife calls me through and after some questions, the radiographer puts the scanner on my belly. I lay back and think about this little life inside of me that’s been ticking down it’s days so far till he joins me. I know what I’m carrying as well, believe me, I just know! I look at the radiographer and her smile is now a frown, she doesn’t look at me but says she will be back in a moment and the midwife goes with her to the other side of the curtain before coming back to me and this time sitting by my side.
Five minutes later the consultant comes in and he was my consultant with my second child so I know him. He smiles and yes, remembers me. Asks how I am and says that he wants a good look at my baby. This guy is great, he’s one of those no shit types and gives you the info you need, he speaks to you like a person and not a procession line. Like a friend and not his job. I have iron problems, and they get a lot worse in pregnancy. So I say hi and although I start picking up vibes, I tell myself to relax. I’m in good hands!
There are now the midwife(beside me), the radiographer and the consultant in the room. 1 hour later there are:- The midwife (holding my hand), the radiographer, the departments senior radiographer, my consultant, another consultant and their number 1. Their voices are hushed, my belly is starting to hurt from the scanner and then everyone leaves and another midwife sits with me for about 10 mins while I get myself de- jellied and straightened out.
My consultant comes back in with the original midwife and the other leaves. Before my consultant say a word, I say “Just tell me.” and so he looks at me and says “I’m sorry but your baby is very ill.” ” Have seen this before and if you want a termination I will offer you one.” “If you want a second opinion, I will send you to the best place.” We talk for about another half hour and then I say refer me. And he does right there in front of me, an appointment for 4 days later at Nottingham Queens Medical Centre ( QMC ) University Hospital. The man I’m to see? Professor James.
I walk out to the car and then the tears start, through a mess I try to tell my partner.
After seeing Prof James and some tests later I am introduced to Dr. A Watson (now Prof A. Watson). He is fantastic and I owe both of them so much more than I can ever put into words….
My baby has this problem…. I will explain without medical terms as it’s easier for you, the reader, to understand….
In a boys penis is the tube that wee comes out of, at the top of the tube is 2 valves, like doors. You need a wee valves open you wee, bladder empty, valves close, wee stops. In my son, The valves don’t open properly, so the wee goes back up to the bladder, The bladder can only take so much before it says fuck you and sends it to the kidneys, and as everyone knows, kidneys make the waste get rid of it but, can’t take it back. It’s toxic. It damages the kidneys basically it kills them.
I will try to make this a little shorter here….
Most cases of this happening are found at about 20 weeks. By that time it is usually to late. (remember this is 11 years ago). I am 22 weeks and a lady and husband are sitting in the waiting room with me and my partner. She is 20 weeks exactly. Their baby has the same problem as ours. We discuss a little of our problems and see we are both going through the same but, she is coming for the big scan, I have already had that. Her and her husband walk in and 20 mins later, he walks out practically holding her up on auto pilot. Their first child and nothing can be done to save it, it’s to late.
I think of that woman often and in every decision I made while pregnant with my son I knew he was fighting to live and I had to give him that chance. I still think of that lady and hope she found happiness. I never did know her name….
So my child will have to have an operation while I am carrying him. They don’t do it often so I’m told and please could they video it? Yes of course as doctors need to learn. Please could junior docs and those in training come watch as they may never see it again? (That’s how rare it was done). They need this experience so yes ok. I am laying in a dark room, sedated my partner has my hand and people float, lots of people some standing on chairs to see better. They are going to put something called a double pigtail through me, through my womb, through the amneotic sac, through my baby s skin and into him.
The double pigtail.
All I can remember is pain, I wont lie, it hurt, they said it would, and it did. It was done via ultra sound and with the longest needles I have ever seen. I still have the needle mark scars all over my belly.
They ended up doing this operation twice.
At 28 weeks his bladder could take no more and exploded. I felt it. We were on our way to the hospital when it happened and as soon as we walked in the door I said at reception something s happened I feel like my insides went bang. No waiting room straight through, and there on the screen my baby, his insides all black from urine that had nowhere else to go.
We are travelling from our home near the south border of Lincolnshire to Nottingham everyday. Its long and we often have to take our children. The stress we are all under is immense. On a friday I go in for another scan and Prof James isn’t there. I see his number 1 and lovely lady whose name I forget. She checks our son out and isn’t happy. She says she must call Prof James. Comes back and says can we come in on monday without our children? They are going to induce me our baby can’t fight no more.
The labour 5 hours of being so frightened…. The doctor telling me I had exactly 5 mins to push him out or they were cutting him out. His heartbeat disappearing and the room going into free fall as the doctor sticks a little cap thing on his head which they can now see to get a pulse…. Him being born with no fluid in the sac….His high pitched cry and the room breathing again…. The midwife crying ( with relief )…. Me and my partner getting a hello and a goodbye as he is taken to S.C.B.U. The emptiness we are left with….
I can’t see him for 6 hours….
Looking back my partner was so strong through it all, he had to be I suppose for me because I couldn’t be. I’m so proud of him for standing where many would have crumbled. His inner strength leaves me in awe….
At 4 days old we are whisked to Nottingham City hospital by lights and sirens. My baby is yellow, is in renal failure and is dying and needs an operation to survive. The operation will take about 5 hours, He was 31 days early, and weighs just over 5lb. 9 hours later the ward doesn’t know what’s going on and the operating theatre has leave us alone to work written all over it. I start smoking again for the first time in 5 years, I’m here at the hospital on my own, my partner at home with our son and daughter.
That was the first of many operations to happen before he was a year old and he spent most of it in hospital. And had many more after that as well….
We never pushed him as he was growing up, not in any way, we were also soft on him when he was naughty, he’d been through so much. When he was 18 months old he started to walk and was always falling over. The GP. wouldn’t believe me that something was wrong and after me shouting and screaming in a packed surgery, sent me to a child s doctor at the hospital just to shut me up. I put Taylor down and said come to mummy, then looked at the doctor and said do you see anything? Yes. she said, I see him limping. FINALLY.
To make it short, after a lot of years countless operations, being told he was going to end up in a wheelchair. Taylor now has his hip and thigh metal plated by the absolutely fucking fantastic doctor Mr Hunter Nottingham hospital again. Top bloke, A shining star who didn’t give up.
Taylor only has one kidney that works and not very well. He is just over 10 and a half years old. his kidney function is deteriorating. its very large and is way under the 50 percent.
Yesterday we were at the hospital and he has high blood pressure, this is new, and not good, its being monitored and they are talking about more meds for that. He has also come home with 2 more meds, new ones. He has bladder control problems and bowl problems, he has social problems interacting with others because of all the time over the years in hospital and missing school, play group and all those important things. He is a very bright but sometimes angry boy.
To look at him, you would think he was “normal”. He is more trouble than all my other children put together, I have 6 with my partner now. I have spent my life with Taylor so far in a kind of denial, denial that I keep thinking he will be ok, that no he wont need a transplant.
Yesterday and everything we were told brings “That day things change for the worse” a whole lot closer. It means I can’t just keep pretending that my 10 yr old bundle of trouble is normal….
I as a mum am supposed to protect my child, keep him safe and well…. While I carried him, I failed that, When he was a baby I failed that, even now I fail at it….Nobody will change my mind on this…. What happened to him while I was carrying him wasn’t my fault it was no ones. but that doesn’t change the way I feel….
He is boisterous, argumentative, funny, insightful, thoughtful, sensitive, naughty,challenging….
At school the teachers say he is one of the most polite, helpful children in his year….
He doesn’t make friends easily but everyone seems to know him….
And yet I can’t help but feel as a parent I am failing him, that even though I try real hard to do what’s right by him….
I’m afraid I’m just not trying hard enough….
An empty space.... 