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  • Choose Your Fighter

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  • I Thank My Donor For 18 Extra Months

    It was the summer of 2009, I was 15 and entering my last year of school. I had 1 nephew and one on the way when another sister announced she was pregnant ‘please let it be a girl!’ She was due at the beginning of June 2010. I dearly love my 2 nephews but a niece, well that’s every woman’s dream isn’t it? A little pink thing you can dress in frills and dresses and then hand back to their mummy.
    Christina was just turning 18 and at her 20 week scan we were so excited to find out the gender of the baby…ITS A GIRL! I was getting my first niece, my parents – their first granddaughter but wait. Bright bowel, that can’t be good. Christina was booked in to see the obstetric consultant and another scan at 24 weeks.
    Its okay, I’m sure it’ll be fine. Let’s wait and see what the OB says.
    24 weeks, still a touch of bright bowel but her dad has crohns. She’ll be fine, let’s not worry too much.

    Christina was booked in for growth scans every 4 weeks and Doppler monitoring bi-weekly.
    The baby’s growth was slowing down, she was still growing just not as fast as she should have been.

    She went for her 34 weeks Doppler and consultant appt. ‘Everything seems okay for now, we’ll see you in 2 weeks for your scan. We’ll see how her growth is and talk about induction’
    6 days later, at 35 weeks Christina was in the bath and shouted mum. Her tummy had pulled as baby moved position ‘get out and have a lay down’ so she did. Baby was moving as normal and she had no more pain. Everything must be okay, she may have hit a nerve?

    6th May 2010, Christina was 36 weeks exactly. Off she toddled to her scan. ‘See you later, bring me a picture of baby’ I told her as I left for school and GCSE prep.
    At lunchtime a text message from mum read ‘come straight home from school. Its important’
    What was wrong? The baby, Christina. I needed to know.

    I got home, quicker than I ever had. ‘The baby’ mum started ‘she’s stopped growing. There’s no waters. They’re doing a c-section tomorrow morning. Christina is first on the list.’ I was supposed to be the birthing partner, I was supposed to be there. Hold her hand as she pushed. Tell her everything would be okay. But she had mum and everything would be okay.
    ‘Don’t worry to much’ I said. ‘She’ll be fine, just small’ mum wasn’t so convinced.

    Christina was taken to theatre the following morning and Charleigh Jayne was born at 11.55am on the 7th May 2010. She weighed 3lb 4oz, the length of a 29 weeker, except she was 36+1. On first checks everything was well but she had to be taken to NICU because of her weight. And I thank my stars she was so small.
    On the way upstairs, Charleigh crashed. Her tiny body resuscitated in the corridor. She was poorly. Upon investigations it was discovered she had 3 severe CHD’s. VSD (hole in the heart), pulmonary atresia (narrowing of the pulmonary artery) and double ventricular right outlet (the two bottom chamber of her heart were one). She needed surgery but she was to small and fragile.

    Charleigh spent 5 weeks in the local neonatal unit before being transferred to Great Ormond Street Children’s Hospital in London. With her mummy and grandma by her side, we knew she’d do well.
    The cardiac consultants there told us, although complex her surgeries are quite straightforward. They fitted a shunt into her pulmonary artery and she came home. 6 weeks old, weighing 2 bags of sugar, she was home.
    ‘Charleigh will need another stent at 2 years and a final fix around aged 5’ the doctors told us. And so with monthly visits to GOSH, daily meds and ng feeding, we had our princess.

    At 8 months old, Charleigh started to become unwell. We went back to GOSH and found out her heart was failing, she needed her new shunt earlier than planned. And with that, she went back to theatre. This, however, brought further surgeries forward- she would now need her full correction op at 3 years old.

    10 months later, she started to decline again. We all knew what this meant. Surgery. Full correction surgery. She was only 18 months old, so much for a tiny baby to go through, but she needed it and these are some of the best surgeons in the world. So with that, on 11th October 2011 we packed her up and off to GOSH we went. 7-10 days was the expected stay and she’d be home with no more surgeries planned. She could go to school and lead a normal life.

    After her surgery, she became unwell. She became IV dependant and she went into partial heart failure. She now needed a transplant. A heart transplant. So tiny, so fragile, so perfect, so beautiful. Our princess needed a new heart. But….children don’t need transplants? Especially not heart transplants. Old people have heart transplants. People who don’t look after themselves have transplants. Not these tiny, innocent children who have nothing but love to give. She was placed on the list. Now we had to wait. Keep her comfortable and healthy enough for such a huge operation.

    December 14th 2011, Christina had D&V she had to come home. Charleigh was in CICU, she wasn’t well. She was in end stage heart failure. My mum was on her own, another sister and I went down to London to stay with mum. She wasn’t strong enough to be on her own. She had spent the last 2 months supporting Christina, she needed someone to now be there for her.
    Kayleigh and I arrived at Charleighs bedside, she was weak. Awful to see, she was dying. Barely could she keep her eyes open, she had zero strength. Her beautiful blue eyed, blonde haired, smiley face had doubled in sized. Our girl, we were losing her.
    As the doctors had yet another meeting on what they could do, the three of us hung Christmas baubles around her cot, she needs to know it’s nearly time for Santa. She needs to know it’s nearly time for ho ho ho.

    The following morning Charleighs lead consultant come to us, ‘Berlin Heart’ he said. ‘Do it’ we replied. The Berlin Heart is a mechanical device which sits outside of the body, attached to one side of the hearts upper and lower chambers and does that side of the organs job.
    As Charleigh was being wheeled away from us we were told ‘now, remember this isn’t a fix. It’s a bridge to transplant and if successful she will stay until she has received her new heart.’ We knew all that, we had one question. ‘If she survives? What are her chances?’ The doctor looked at us and said ‘we’ll do our best’. He didn’t think she’d come back, we didn’t think she’d come back. The whole family arrived, we had all said our goodbyes. She’s in their hands now.
    9 hours later, the phone rang. It works!! The Berlin Heart is on, its working and she will be in CICU for us to see shortly. The relief! These people are miracle workers.

    Charleigh spent 252 days hooked up to this machine when we got the call. We have a heart! It was 4am, it was August 2012. It was a day we had thought would never come. It was bitter sweet.
    Kayleigh was now overdue with our 3rd nephew, I was her birthing partner. I had also never not been there for Charleighs surgeries. I stayed home. Ashleigh accompanied mum back to London to be with Christina. It was a long day. 4pm Charleigh was finally taken down. She had a second chance. A family, whilst in their worst moments, choose to save ours. Their child would save ours. Thank you will never be enough.

    Charleigh came home 6 weeks later, September 2012, proud of her battle scars. She was 2 years & 4 months old and she knew she had won a battle. You would ask her ‘where’s your new heart?’ She’d reply ‘yeah’ and pat her chest. She was a warrior.

    Unfortunately, all was not roses as imagined. Charleigh developed infections and rejection and spent the next year in and out of hospital. A few times we thought we were losing her again. That’s when we were told she would need a second transplant but she was well enough to spend Christmas at home. I could not be prouder of that little girl, her mummy and the battle they had been through. As she placed the star on the tree on Christmas eve, I cried. I never thought she would be here for this.

    A checkup at GOSH in the new year revealed the rejection was back. She was put on even more medication and we were told she wasn’t fit enough to be relisted. Thats okay, she’s fought rejection once. She can do it again.

    Sadly, on the evening of 16th February 2014, Charleigh collapsed at home. She was rushed to the local hospital but despite all their efforts and consulting with the team at Great Ormond Street. We had lost her. My heart broke, it still breaks now.

    I now have my own son. A blue eyed, blonde haired, podgy faced one year old. I see Charleigh in him everyday.
    Although I mourn the death of a perfect little princess I thank the stars above that I was, am, her auntie. I thank her donors family for giving us 18 extra months with her. And I thank her for all she had taught the doctors at Great Ormond Street. Charleigh was a complex case and because of all the curve balls she threw at them, they can use the knowledge gained from looking after her to treat other children.

  • The Girl Who Only Knows Life With Tubes

    January 2015 family have been living under a lot of strain since the birth of their little girl Hannah Jones in June 2012. 

    Her parent’s Katy and Ryan Jones live  in South Shields with their other two sons 8 year old Stephen and 3 year old Joshua. 

    I write that they live in South Shields but sadly this family have been living separate lives since their amazing little girl was born, 80% of this little one’s life and her Mother Katy has been in the RVI or Birmingham hospital away from the rest of their family. 

    Katy knew something was not quite right at 20 weeks pregnant she expressed her concerns on several occasions but was told not to worry.  At 25 weeks she refused to leave the hospital as she could not sit down at all, the pressure was so severe, at this point the doctors confirmed she was 5cms dilated and their little girl was born the next day weighing 1lb 9oz!

     

    Hannah was very poorly she was unable to breathe on her own and was placed on a ventilator 20 minutes after being born. She had a tube fitted in her chest to drain the fluid and also suffered a bleed on the brain which caused Cerebral Palsy.   Such a worrying time for this family Hannah was so poorly it wasn’t until Hannah was 6 weeks old that her Mummy and Daddy could give her a cuddle.

    Such a lot for this little body to suffer, at 5 months old she endured theatre to have a shunt placed in her brain as she suffered from Hydrocephalus :- a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles of the brain.  This causes increased intracranial pressure inside the skull and may cause progressive enlargement of the head if it occurs in childhood, convulsion, tunnel vision and mental disability.  This was so severe in Hannah that she was operated on.  However in theater she suffered a second bleed.  Prior to this Hannah was showing signs of smiling, and her eyes were starting to follow, but after this bleed, this ability had to be worked on again from scratch this small milestone had been lost.

    Hannah was weaned off the ventilator onto oxygen and amazingly was weaned off full breathing support by 6 months old.  However the most severe heath problem suffered owed to Hannah’s prematurity is the disease called Nectrotizing Enterocolitis the most serious intestinal disease among premature babies.  NEC occurs when tissue in the small or large intestine is injured or begins to die off.  This causes the intestine to become inflamed or in rare cases develop a hole.  When this happens, the intestine can no longer hold waste, so bacteria and other waste products pass through the intestine and enter the baby’s bloodstream or abdominal cavity. This can make a baby very sick, possibly causing a life-threatening infection.

    Hannah’s was so severe that she had to have her large bowel and part of her small bowel removed.  This only left her with 47cms of her small bowel.  This meant that Hannah’s life was never going to be the “norm” she was not able to absorb nutrients out of oral feeds, this meant further surgery for this little girl who had gone through so much already.  Hannah was fitted with a central line this is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood products over a long period of time.  A catheter is often inserted in the arm or chest through the skin into a large vein. The catheter is threaded through this vein until it reaches a large vein near the heart.  This was fitted into Hannah’s chest so she could be fed Total Parental Nutrition also known as TPN.  This supplies all daily nutritional requirements but does not come without severe side effects and can cause the following life threatening complications;

    Infection – Infection is a common cause of death in these patients, with a mortality rate of approximately 15% per infection, and death usually results from septic shock, Blood clots, Fatty Liver and Liver Failure – This is common with long term users – The pathogenesis is due to using linoleic acid (an omega-6 fatty acid component of soybean oil) as a major source of calories.Hunger pains and other re-feeding complications.

    At this point of this family’s heart breaking journey, they had lived separate lives, the mother with her daughter in the RVI and the father at home with the boys.  Visiting was not very frequent owed to the risk of infection and the sheer expense of travelling to and from.  This put such a strain on them all.  A small light of hope after Hannah’s central line was fitted, they had the chance to go home, this was after Katy was fully trained in all nursing duties to manage  Hannah’s medical requirements.  Day 289 of Hannah being born Katy brought her daughter home with what seemed like the hospital with her.  The aim was to feed Hannah TPN via her central line Sadly this was not a long stay at home, since discharge Hannah has had a very stormy 2 years requiring 8 surgeries to try and improve her condition.  In 2014 alone they only managed 9 weeks at home, Katy and Ryan suffer terrible guilt not being able to be a full time parent to “all” of their children.  Katy has never left Hannah’s side she is the only one who is trained to take care of Hannah’s medical needs.

    2014 was very distressing for them all, Hannah spent 6 months in PICU due to infection that turned septic, they were so worried, their little girl who had fought so much was fighting to stay alive.  The sheer spirit and determination of this little fighter and love from her family, got her through it and she defied all of the doctors!!

    However when she was discharged from PICU on to a ward, this little girl had been so isolated she found even cuddles from her Mammy very distressing, she cried and cried.  This broke Katy’s heart, but as with some children who had suffered such trauma, they need re-habilitating back to some way type of normality.

    She has had numerous admissions to the RVI and has had her central line replaced several times owed to infection.  In July last year Hannah was referred to Birmingham Children’s Hospital for assessment for a bowel transplant it was here that they discovered that she also had fibrosis of the liver. The doctors from Birmingham hospital have put a plan in place, at the moment Hannah is currently in hospital as they are trying a different way of feeding.  She already has a feeding tube into her stomach which is now fitted with a G Jet which will attempt to feed her milk into the only lower part of her bowel, whilst the other part is permanently on free drainage.  It is heart breaking that this is Hannah’s only way of life that she knows with tubes coming out of her little body.  She is attached to a machine 24/7, TPN being fed through her veins, feed going through to her stomach and a bag that is on permanent drainage.  This is her last hope as if this does not work she will be placed on the list for a stomach, bowel and liver transplant. On top of all of this worry they have been told that Hannah can only accept a match where the donor has passed away from stem cell death and is under 20kg.

    Hannah is extremely vulnerable partly due to the fact that the RVI are unable to access veins to fit anymore Central Lines…this is her lifeline at the moment.  The only Doctors who are able to access the three veins that are left are those at Birmingham Hospital sadly these lines are not lasting long in her little body!  All her parents can do is keep her as safe as they can, each day they are just grateful she is still with them.