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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    August 2012

     


    We have 2 articles for you this month. Emma's update on Finlee and Lisa's article about Pulmonary Atresia.

    Emma Grimshaw's updated story for Finlee

     

    Well it come's to the date for open heart, date all set, but Finlee wasn't having any of this and got ill. We ended up down our local hospital for a week.


    A new date was set the 8th Nov 2010 so we headed up the day before to get settled in back in ward 32. (home from home).

    Finlee was set to go down for around 8am but it was all held back for an hour as 1 of the team got hurt on their push bike on their way in to work doing what they do best help save are babies lives! Well the time came to take him down.  The dreaded walk to the room. The room where you have to put your baby asleep and the life of your child in to the hands of other people. Amazing people though who work the hardest they can to keep your child alive. I was holding Fin while they started to use a mask to put him to sleep. As he had a shunt in it takes a bit longer for it to work and he started to fight it.  It’s heart breaking to try and hold your child to fall asleep and not knowing if you will ever see them again but knowing that it is the best thing for them.

    If I remember it was about a 5 hour op that he had and I just had to wait, wait for the phone call to say I could go and see my son in PICU.

    Walking round Bristol city centre in a daze, I would look at people and think and want to scream out to them what I was going through. My head was a mess.

    Anyway the call came, rushing back to the hospital and the picu ward. And there he was again for the 3rd time all wired up machines beeping here there and everywhere. This time though it was through his chest known as the zip. All was going great but Finlee being Finlee that night he wanted to have a move about and tried to make an escape out the back of the cot while all wired up and under sedation. He likes to keep the nurses on their feet! But all went smoothly and was back up on ward 32 after only around 30 hours in PICU. Wasn't a happy chap on the ward (but who would be after what he just been through). In pain and a massive plaster going down his chest.

    After a few days on strong drugs the plaster came off. BUT I wasn't happy that I had to ask as I found out when they move a child from PICU to the ward they are only on paracetamol! Anyway Finlee was doing great and within a week we where back home.

    Still a long road ahead, as he only just started to walk around using the sofa and bit's to help him I had to keep an extra 3rd eye on him as the chest bone takes up to 3 months to heel! But he has been doing great 3 month check up went to 6 months then 9 months and now 1 a year.

     

    Finlee

    Till the time comes where I have to put my son through all this again to keep him alive!

    Almost 3 now and making up for lost time and being a monkey. But it's not all plain sailing till the next op. Cold weather = bad chest hot weather = grumpy sweaty child bad chest. He still can sleep up to 3 hours in the afternoon as he tires quicker than the normal child. And a few months back there was 2 cases of scarlet fever going round at his nursery. I had to keep him off as this would put him in to hospital unlike a child with a healthy heart. And always on anti B's as when taken to the doc his chest doesn't sound great.

    Walking with the dog and he will have a short run and will have to sit down and catch his breath back. But apart from all this he is my inspiration, my son the strongest person i know, MY SON MY HEART HERO. xxxxxxxxxxx

     


     

    Please click here to read Finlee's Story as told by his Grandparents

     

     


     

    Pulmonary Atresia - by Lisa Hine

     

     

    If your infant or child has been diagnosed with pulmonary atresia (PA), an understanding of the condition will help you to cope with this rare and complex congenital (present at birth) heart defect. While very serious, pulmonary atresia is treatable surgically helped at any children’s heart hospital, and recent surgical advances have greatly improved your child’s outlook for success.


    In pulmonary atresia, the pulmonary valve—which is normally located between the right ventricle and the pulmonary artery—is abnormal and doesn’t open. This means that oxygen-poor (blue) blood can’t flow forward from the right ventricle to the lungs to get oxygenated. The failure of the pulmonary valve to develop can also result in a small (or missing) right ventricle that can’t adequately pump blood to the lungs.

     

     

    • Pulmonary atresia isn’t just a single defect, but, rather, a cluster of associated defects.
    • PA affects one out of every 10,000 babies.
    • Most babies with PA show symptoms on the day they’re born.
    • Surgery or interventional catheterization is necessary to improve permanent blood flow to the baby’s lungs so that enough oxygen is added to his bloodstream to meet his body’s needs.
    • A series of three staged operations may be performed to re-route blood flow, starting shortly after birth and concluding when a child is a few year’s old.


    Comparison with a normal heart


    normallarge pulmonary

     

    In a normal heart, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped through the pulmonary artery into the lungs, where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, then is pumped through the aorta out to the body.


    But in PA, the abnormal development of the pulmonary valve prevents oxygen-poor (blue) blood from passing from the right atrium to the right ventricle and on to the lungs as it should. Medical and surgical interventions are required, since oxygen-poor (blue) blood cannot meet the body’s demands, and this situation cannot support life.

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