Trevor Mann Baby Unit - The Royal Sussex Hospital

I have set up this page to tell people our story and to show them how much people go through whilst having children in the baby units., and how much hard work, money, equipment and support is needed to help make sick children better.

This is our story.

In November 2008 our twins Chloe and Kieran were born prematurely at 24 weeks and 4 days by emergency c section, which left Kieran very badly bruised all over his body. We were transfered to the Trevor Mann Baby unit the day after the twins were born.  They arrived at the hospital before we did and we didn't get to see them until19 hours after they were born, (We had a glimse at a distance of them before they got transfered). When we first saw them the shock we saw was unbelievable and it broke our hearts to see them both. So tiny, not much bigger than our hands, in these huge incubators, with wires coming off them in all directions, hooked up to so many machines doing so many diferent things for them.  The were so tiny, so beautiful and so fragile.

Kieran seemed to be doing ok, and the staff decided that he could breathe on his own, so they took him off the ventilator to see how he did. Sadly he then went down hill and had to be put back on the ventilator and not long after all tests he had said that he was very very sick, and that there was nothing more that they could do for him. Meanwhile Chloe was still on the ventilator and seemed stable.  The on call priest at the hospital was called to come and Christan both Chloe and Kieran before it was too late.  During this time my mother had travelled from Cambridge and had the chance to meet Kieran and Chloe the day after they were born. My mother was the only person besides me and my husband to meet Kieran. They were both Christened at about 1930 on the 21 November, and Kieran died about 15 minutes later. They told us that he was very very sick and that there was nothing more that they could do to help him.  He appeared to be acting like he was having a bleed to the brain or something similar although they could not see this. I remember holding him and watching him, and he looked at me and all I could see in his eyes was pain, and he looked at me and this is what I believe he was trying to tell me, "I tried to fight it mummy I really did, but I can't do it anymore." This is what I could see in his eyes when he looked at me, that and pain. We were asked to take him off the ventilator and let him go as there was nothing else that could be done. That is one of the two hardest things I have ever had to do in my whole life. Both me and my husband had a cuddle holding him before they took his tube out. We went into a room where Kieran was placed on my chest, and died cuddled up to his mummy with his daddy cuddled close.

Chloe however was still fighting, and seemed to be doing ok. She suffered with Jaundis and had to have the ultraviolet lights to help her with that, but with her little goggles on she looked like she was sunbathing and loving alot of it. She looked so sweet every time she needed it. Chloe seemed to be hooked up to so many different monitors, she had a long line in, morphone, insulin, tpn drip, feeding tube, and a couple of other medications that I can't remember the names off, as well as her heart monitors, and blood pressure monitor. Throughout her time in the unit she had several lots of antibiotics.  She then went on to have a bleed to her lungs and to her brain.  This scared us so much and we really thought that we were going to loose her there and then just like her brother.  She continued her fight, and seemed to be coming back through it. The constant scans to her head and x rays to her chest, showed that the bleeding had stopped and seemed to be clearing up on her chest, although she did have help with this as she had to have physio every few hours to work the dried blood of her chest. She then went on to get pnemonia. She also had a canular in her arm that sadly tissued and leaked into her arm causing her a burn that took all the skin off her arm leaving exposed tissue and tendons.  This then had to be constantly watched and dressed and contact kept with the surgeons to make sure it healed ok.  Further to this because after so long she had been on a ventilator constantly she then developed Chronic Lung Disease.  Her bleed to her head did not appear to be getting any better but was constantly monitored with hope that it would go down and drain itself without her having to undergo any surgery.  Doctors tried doing lumber punctures to her in hope to help clear the fluid, but this did not work.  Chloe then went on to get an infection in her leg from where a canular had been, so had to have surgery on her leg to remove the cyst/infection that had formed.  Througout this Chloe was having constant monitoring of her lungs as Doctors were constanly trying to get her off the ventilator. X rays at a couple of points showed that her left lung had collapsed so she needed to have a chest drain in to try and re inflate it.  She went onto different types of ventilators to try and help her chest problems. Chloe also had to be bagged a few times during her time at the TMBU as she fought the ventilators breathing for her, and basically held her breath, nurses then had to take over to get her breathing normally again.

Througout all this Chloe was a little character, even with the constant foot pricks taking blood from her feet to test her infection levels and carbondioxide levels, with canulars constantly being put in and taken out. She had to have mouth care to clean her mouth which she loved, she loved to try and suck on the cotton bud as you did this, and her little tongue moving all over the place to find it. We did her nappy changes and she loved to wee or poo whilst you tried to do this.  She didn't really like alot of noise and loved the dark.  She knew who mummy and daddy were and would wake up and look at us to the sounds of our voices, and she loved me to sing to her, and when she was upset singing helped to calm her down. She loved to hold our fingers, and suck on her breathing tube.

The whole time she loved throwing her arms and legs all over the place.  When she was first born she did this so much that they had to sedate her to stop her tissuing everything that was in her. She then had the bleed to the head and lungs. So when they took her off the sedation drugs it seemed to take about a week for her to start moving again. We feared that the bleed had caused her to become paraylsed as she wasn't moving. This broke our hearts as we were so used to seeing her thrashing her arms and legs around.  She eventually started to move again as the drugs had cleared out of her system. 

10 days before Christmas day Chloe was well enough that I could hold her for the first time, outside of the incubator.  This was the most wonderful experince. Unfortunately my husband didn't have the chance to hold her as she needed to get back into her incubator, and he hoped that the next time he could hold her. She was very well behaved and was a good as gold during this time for the nurses. She just wanted a cuddle with her mumy.

Because Chloes lungs did not seem to be inproving doctors wanted to try her on some steroids to see if they could improve her lungs enough to try and get her of the ventilatior.  These were given and Chloe appeared to be doing alot better.

On Christmas day santa had visited Chloe and she had lots of presents to open with her mummy and daddy. She was rather quite on Christmas day and I thought that something was not quite right with her, as she was never usually so quiet. We put it down to her needing a lot of rest with everything she had been through. In the middle of Christmas day Chloe was awake and reached her arm out to me and my husband and opened and closed her hand to us. We saw this as she was waving to us and we laughed and smiled and were so happy.

On the morning of Boxing day, we received a phone call to tell us that Chloe was very sick and that we needed to get to the unit as soon as possible. Luckily we were staying in the Ronald MacDonald next to the entrance to the hopsital, so quickly ran over to the unit as quickly as we could.  What we saw when we got onto the ward haunts me every day.  We went into the unit to find a screen hiding chloe from the rest of the ward, with four or five nurses working on her. Chloe's favourite nurse was doing resusitation on her. My baby girl was dying.  Nurses were fighting to bring her back but no matter what they tried they couldn't. Her heart was very slow and she was now unconsious.  The staff worked on her for half an hour when finally they decided that there was nothing more they could do, and we were faced for the second time, of the decision to stop, and let her go.  We both had a cuddle with Chloe and went into the same room again where I held her and they took the tube out, she died in mummys arms just like her brother did.  Chloe died on Boxing day at the age of 5 weeks old.

As it turned out that wave on Christmas Day, was a wave to say goodbye.  At the time no one knew what happened with Chloe, and we requested that they did and x ray and head scan on her to see if this shed some light as we did not want a postmortum done on her, she had already been through enough.

Following these tests, it turns out that Chloe had loads of little cysts on her lung that was causing her a problem. In the few day that she hadn't had any x rays, and since she had had the steroids, all these cysts had formed loads of balls and were growing and growing, and in the end they put so much pressure on her heart that it coudn't beat any longer. They basically squashed her little heart till it could not take any more.

She fought as hard as she could and is the toughest and strongest person I have ever ever met, and will always cherish both her and her brother.

We spoke with Chloe's favourite nurse who was as much devasted as we were, and she told us that Chloe had been awake and watched everything she did. She said that Chloe needed to be bagged as she was fighting the machines again. She also said that Chloe looked at her as if to say, "Whats all the fuss about?" and then not long after she went unconsious.  Even though we weren't the last people to see her awake, we are so happy that she was with her favourite nurse when she went unconsious. If we couldn't have been with her, that is who we would have wanted with her.

Both Chloe and Kieran have been reunited together and were buried together.  Kieran we buried on the 22nd December 08 which was the monday, Chloe died on the Friday, just 4 days later.  They are together watching out for us and know we love them with all our hearts, and one day we will get to meet them again.

So we just want to tell you our story and let you know how much hard work the staff in the baby units put into making babies better.  During out time in the unit we saw several babies die. But the staff work so hard to help them, they need fund raising to help buy all the equipment that is needed and this isn't cheap. One incubator cost £25,000.

We will be doing different fund raising events and hope that anyone who can help through donating on this site will do so, not matter how little, it all adds up.

Thank you for reading our story and thank you for donating

Ceris and Adam x

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