Dear Joe

I get sad when you tell me you hate me, when you tell me you want to live in heaven and when you tell me I don’t love you.  Any mother would but with you it hurts me more.  And you know the reason why because I tell you every time.  Because you are special and your story is both sad and triumphant.

I already had Luke who was just five when you were born.  I knew when I was having you because I had to have you taken out of my tummy.  So on the morning of the big day, I kissed Luke goodbye telling him that he would meet his baby brother after school.  He was excited about meeting you but also excited because he was going to get a few evenings having a ‘boy’s night’ with his Dad whilst I stayed in hospital with you.

We set off and I remember feeling nervous and upset.  I already had Luke and I loved him beyond belief, now I had to share love between two and I was scared I wouldn’t be able to.  I have since been told this is a natural feeling.  On the way up Canvey Way I saw a solitary magpie.  You know how Mummy is superstitious about them, believing they bring bad luck.  Well I saluted it and gave it the usual salutation of ‘Good Morro Magpie, how is your wife today’.  I sad to Daddy that it was a bad sign but he just laughed it off.

On arrival at Southend Hospital, I was shown to my bed and the nurse prepared me.  It was quiet on the ward and I was told the two ladies either side both had given birth and had babies in SCBU (Special Care Baby Unit).  I said to your Daddy again that it was a bad sign.  He didn’t comment, maybe he was starting to worry too.

Finally they took me to the operating theatre and performed the operation.  You came out all chunky and cute and were the spitting image of Luke when he was a newborn.  They took you to do the checks that they do and you scored very highly so we were taken into recovery.  I held you and you were gorgeous.  I tried to feed you but you weren’t interested.  All you did was make grunting noises with your little mouth and your tiny nostrils kept flaring.

Daddy went to ring Nanny to tell her she could tell everyone you had arrived and were called Joe.  I don’t know where that name came from because I had thought you were going to be called Jake.  But I am glad Joe was the chosen name.

Whilst Daddy was away, I told the Nurse about you making noises and expected her to say it was normal.  But it wasn’t normal; in fact nothing has ever been normal again.  She told me she had already noticed and that she had called a Paediatric Doctor. 

Daddy came back and the Doctor arrived.  She wasn’t happy with you and took you away to SCBU.  I was still numb from my operation and couldn’t move my legs yet.  I was worried and Daddy had to go and ring Nanny to tell her there was something wrong.  She thought we were being dramatic but it soon materialised that we weren’t.

When I was allowed back to the ward I desperately wanted to see you, so they wheeled me into the SCBU and I saw you in a little incubator with a few wires.  No one knew what was wrong with you but we did know it was serious.  I screamed and I cried.  All I could think of was that you had cancer which to me was the worst disease in the world.  The Nurse thought I was losing it, going crazy and I probably was.  I think Nanny was there by this time with Luke.  So I had to calm down.

They took me back to the ward, with me laid out in the bed and tears falling constantly.  Thankfully, they didn’t leave me on the ward with all the Mums nursing their own babies; instead they gave me a room of my own.  And guess what number that room was?  It was 13.  I knew then it was another bad omen.

I begged to be allowed to see you and after much persuasion, I managed to get out of bed and into a wheelchair.  I sat looking at you and you looked perfectly fine.  Other babies were tiny but you; you were a big chunky baby who weighed 8lb8oz.  I couldn’t understand how anything could be wrong and we still didn’t know.

I went back to my room and it was a waiting game.  We waited and waited.  Luke was scared to cuddle me because I looked so fragile and poorly.  But he came round eventually.  It was great to have his arms around me but I wanted you in my arms as well.

Hours passed and eventually we were told that Luke could come and meet you, so began the process of me getting out of bed and into the wheelchair again.  As we came into the main corridor to enter SCBU you were wheeled out with machines bleeping and wires everywhere.  I was screaming again.  Where were they taking you?  I remember hearing someone say that they had tried to stop us coming.  I will be honest; I thought you were dying there and then.  But I couldn’t do anything.

It transpired that you were going to a special room where they would link you up via camera to a hospital in London.  Such technology is astounding but it worked.  We then found out what was wrong with you.

You had a condition called Transposition of the Great Arteries.  In a normal heart the aorta and pulmonary artery pump oxygenated and de-oxygenated blood around the body.  But with you, the aorta and pulmonary artery were the wrong way round so the blood was going the wrong way.  That is the simplest way I can describe it for you.  It was major; the Doctor told us and would mean you being transferred to The Royal Brompton Hospital in Chelsea, London.

The Doctor explained that the only way to cure the problem was for you to have open heart surgery.  An operation called an Arterial Switch.  You had to leave for the Brompton that night.  So around midnight I came to say goodbye to you.  I couldn’t stop crying.  Daddy had to follow you up in his car and I was left alone at the hospital.

I wasn’t allowed to leave yet, I wanted to but I was recovering from my operation so I had to stay.  I think it was at this point I tried detaching myself from the whole situation.  The Nurses had taken a couple of Polaroid pictures of you so I had them stood up in my room but I kept turning them face down.  I think I couldn’t bear to look at you when I could lose you.

The Nurses were fantastic; they talked to me in the middle of the night and let me call the Brompton to check on you.  They also encouraged me to express milk for you.  I hadn’t planned on breast feeding but it was the nurses way of keeping a bond with you.

Poor Granddad had to take my milk in a rubber glove packed in ice all the way to London for you.  But I have a photograph of you drinking it and it makes me smile now.

The next day Daddy was with you at the Brompton and they had to perform a minor operation.  It involved putting a balloon into your heart via your groin and inflating it.  Everybody is born with a hole in their heart which closes within three days of birth but they needed your hole to stay open so that you had more oxygen circulating.  I gave permission for the operation over the telephone. 

It went well and when I was asking about you, I was told you were totally normal.  I hate that word now.  But all I kept asking was if you were normal.  Apparently you were sleeping, drinking and having cuddles like any baby would.  The only difference was you were in hospital and your oxygen levels were being observed.  But they all seemed to be okay.  The worst part was, I wasn’t with you and I hated it but still seemed detached from it.

Nanny and Luke came to visit me during the day.  Poor Luke, you wouldn’t believe what he went through Joe.  One minute he had a Mummy and Daddy there all the time and was looking forward to seeing his baby brother.  The next minute we had disappeared, there was no baby and Nanny was living with him.  He was so brave though but like me he didn’t talk about you either.  He was blocking it all.

I was finally allowed out of hospital on the Friday, you were born on the Tuesday.  I had to rest so we spent Friday at home.  It was awful.  I hated being home without you.  Every room I walked into was all wrong, you should have been there crying or sleeping.  I kept breaking down but I was still detached.

On the Saturday morning, Nanny, Luke, Daddy and I drove to Chelsea to the Brompton to come and see you.  I could hardly walk, so I had a wheelchair take me to you.  I kept crying on my way and Nanny told me I had to stop.  She wasn’t being horrible but she wanted me to enjoy meeting you.

We came in and then I saw you.  A mass of dark hair on your head and still a chubby little monkey. I fed you then, it was a weird sensation as I had never fed Luke with my breast and trust me Joe, I have the photos to prove it, my boob was bigger than your head!  A fact I am sure you will be mortified about when you read this.

We spent the day doing normal things, feeding you, cuddling you, changing your little bottom.  But then we had to go.  People will probably wonder how on earth I could have left you there.  But I had to.  I had Luke as well and he was as traumatised as the rest of us.  I also had to recover myself.  I actually hate myself now because I didn’t sleep at the hospital with you but at the time I did what I thought was right.

I don’t think I have ever cried as much as I did that first day.  I cried all the way home in all the traffic.  I could barely speak I was so upset.  Tears fell the whole way home.  I had been detached when I wasn’t with you but having seen you and held you and been a Mummy to you, I now had to face the fact that I could lose you.  And even now, I want to cry when I remember.

We spent every day coming to see you once we had dropped Luke off at school.  You really were a normal baby in every sense of the word, other than inside where your heart had decided to form incorrectly. 

They scheduled your major operation for a Friday I believe.  Daddy and I came up the night before.  Luke was the bravest boy ever, he hugged us and kissed us and waved us goodbye.  After we had left however, he cried and cried.  Nanny told me.  He didn’t like what was happening, not having his parents and I guess worrying about you.  He wasn’t old enough to understand and when he asked me when you were coming home and if you were coming home, I had to keep saying ‘hopefully’.  I didn’t want to say definitely in case you didn’t.

The night before your operation was scheduled we sat by your crib in Rose Ward and the Doctor came to see me.  I had to sign a consent form for the operation.  The Doctor had a very strong accent and it was hard to understand him but I did hear him say there was a 7% chance of failure.  It didn’t matter to me that there was a 93% chance of success and that this was a common problem, all I heard was you could die.  I cried but I still signed the form because if I didn’t you would have died.

Daddy and I were given a room upstairs in the hospital to sleep in.  The next morning we were up bright and early and by your bed but your operation was cancelled.  It was devastating news but at the same time, they told me it was rescheduled for the following Tuesday.  I liked that, I had a good feeling because you were born on a Tuesday and survived and now I had hope that having your operation on a Tuesday would also be a good sign.

So we spent the next few days doing the normal things parents do, just confined to a hospital.  Luke used to come up and see you all the time.  He would wear a Doctors uniform and made himself a badge that said Doctor.  He loved stroking your hair and he told you he loved you lots of times.

I used to whisper to you all the time, tell you how much I loved you and how I wanted you to get better and come home.  You just used to look at me.  Once you got really bad wind and you gave the most terrific ‘smile’ right when Luke was stroking your hair.  He was so excited because he had seen you smile first.

At home however, Luke wouldn’t talk about you.  Nanny tried to get him to talk but he wouldn’t.  He must have been so scared and afraid inside.  Although one day, all of a sudden he started drawing you pictures and talking.

You had a few visitors from the family.  Ricky came to see you but apparently he couldn’t deal with it, so he didn’t stay more than a few minutes.  Nanny Jean came to see you.  Kim and her friend came to see you.  Auntie Jennifer came and Uncle Edward also.  Auntie Kath was a huge support, she came to Canvey and stayed with Nanny and came to see you too.  Others wanted to come but I didn’t want too many people seeing you, for their sakes really, because if you didn’t make it, I figured it would be easier for everyone if they hadn’t met you.

One night when we were at home asleep, the phone rang.  Dad was out of bed and dressed by the time I answered it.  The hospital only rang to tell us they were moving you into another place for the night as they had given you medication and wanted to monitor you but it was so scary hearing that phone ring.

So the day of the operation came and once again we were with you.  As they wheeled you to the theatre we were told it was going to be a long day and would take up to seven hours.  The nurse said we should go have a few drinks but I couldn’t as I was on tablets.  We came into the pre-op room with you and I kissed you goodbye.  Daddy did too.  I told you I loved you and wanted you to be strong so you could come home.  Daddy did the same.  And then we had to leave.  This could be the last time I ever got to smell you, kiss you, touch you or tell you I loved you.

This is quite simply the hardest thing I have ever had to do in the world.  It broke my heart in two. 

Daddy and I went for a walk along Kings Road, Chelsea looking in the shops that we would never be able to afford to buy anything in.  We read the paper, we tried to sleep but the fire alarm went off and we had to evacuate.  Someone had burnt toast!  And then we just waited.  They had said seven hours and just about that time, we sat in the foyer of the hospital.  They had said they would ring as soon as you were out of surgery but I somehow just knew that you were and I rang up to the PICU (Paediatric Intensive Care Unit).  I was told we could come up and sit in the waiting room.

I must admit I was scared.  I didn’t know what they were going to tell us because when I asked if you were okay on the phone, they wouldn’t tell me.  So we sat in the room and eventually the Doctor with the strong accent came in.

He told us the operation was touch and go and that they had lost you once and had to restart your heart.  I didn’t process this at the time.  All I heard was the operation had been a success but also that the next 72 hours were critical.  And then we were allowed to see you.

I did break down then.  You had tubes coming from everywhere, you were ice cold and because of complications the doctors had had to leave your chest open because your heart was so swollen.

It turned out that they had to remove capillary vessels and other things that were as small as 1mm and stitch them back in, in the right place.  When they stitched you back up the first time, your heart wouldn’t work and they had to shock you and do it again.  Thankfully it worked then.

You were on a ventilator and sedated and you looked like a wax model. I have never seen anything so sad but at the same time so happy because I got to touch you again.  The nurses encouraged us to talk to you even though you were sedated.  And we were allowed to touch you.  I don’t know if you ever heard or felt me but I was there Joe the whole time.

We had to wait this 72 hours to see if you would make it.  But we were there all the time willing you to get better.  We loved seeing your urine fill up the bag because it meant your insides were working and that it was a good sign.

Eventually, it was time to remove the sedation.  You started to wake up after a little while.  Crying as if you had a sore throat, which you probably did because you had a ventilator tube.  But you were awake and amid all the wires and bleeping, I was allowed to hold you.  I was so scared but you looked at me and I was so happy.

The most amazing thing I have ever seen is your heart Joe.  Because your chest was open and covered in clear plastic to stop infection, we were able to see inside your chest and seeing your little heart beating was an awesome moment that words can’t describe.

I got poorly myself whilst you were in Intensive Care and had to go to A&E at another hospital.  I was so lucky because they saw me really quickly, gave me medication and sent me back to you.

A few days later your surgeon came into the room, looked at you and looked at the monitors and said ‘he’s going to be fine’ and walked out again.  It was that simple.  I couldn’t believe it and kept asking everyone if he had really said that.

Then was the time they had to take you off the ventilator and it was so scary wondering if you would actually breathe okay on your own, but you did.  And then all too soon you were back on Rose Ward with the wires slowly coming away.  The awful part was when they had to remove the pacing wires from your heart.  They went in your tummy so there was a little big hanging out and they literally tugged to remove the internal parts from your heart.  I didn’t like that and neither did you because you cried.

Unfortunately, you got an infection but anti-biotics worked and it was soon time to transfer you back to Southend.  It was horrible to see you being pricked with needles.  I was getting upset because they couldn’t find a vein.  But eventually they did – in your head!  Poor little boy had been through so much and ended up with a canula in your head and a paper cup to stop you pulling at it.  We did call you cup head a few times!  As crazy as it sounds, I wanted you to stay there where it was safe and there were Doctors and nurses around you.  Failing that I wanted to move to Chelsea!

An ambulance transferred you to Southend hospital.  The only reason you had to stay in there one night was because of your infection.  They wanted to keep you in a week to give you anti-biotics but we promised we would take you every day.  So Daddy and I went home and got the house ready for you.

And the next day we were able to bring you home.  I was petrified.  But you were doing well.  The first night you didn’t cry, you just fidgeted in your Moses basket by my bed.  I figured out that it was so dark and quiet compared to the noise and bright lights of the hospital.

You were 5-6 weeks old by this point but now you were home and all ours at last.  You had to have medication for about six months which you hated but then you really were ‘normal’.  All that trauma that thank goodness you don’t remember.

 Now, as I write this, you are a healthy seven year old.  You are cheeky, you moan a lot, you hit your brother, you whinge about a lot of things but you are you.  You are also very clever at school and a fantastic football player. 

 We have had a few little scares but all have been nothing to worry about.  Even when you went into hospital for the day and had to have another operation because the Doctors thought your arteries had narrowed, you were brave and it turned out they hadn’t after all.

 We have a check up next month and I pray the Doctor tells me the same as he has every time – ‘his heart is normal, which is quite amazing considering what he went through.’  I understand that at some point you may have to have another operation and I worry all the time about you.  You live a normal life, you play sports and have no restrictions but inside me Joe, I am worrying all the time.  The condition you have is relatively new and not a lot is known about how it affects heart babies as they grow.

 Even though I worry, I treat you the same as Luke.  You are both amazing kids.  Luke for being so brave when you were born and never causing a fuss.

 So Joe, I may tell you off or not always let you get your own way.  But as hard as it is for you to believe, that is because I love you.  And I do love you Joe, with every beat of my heart and every breath I take.  And don’t ever doubt that for one minute.

 Love Mummy