Jessica’s handmade heart

This photo was taken two and a half years ago as my daughter Jessica recovered from an open-heart surgery known as the Glenn procedure.

Jessica's handmade heart - Little Hearts, Big Love

As today is World Heart Day, I thought I would share a little more about my daughter Jessica’s particular heart condition, which is called hypoplastic left heart syndrome.
Jessica's handmade heart - Little Hearts, Big Love

This is my basic understanding of how Jessica’s heart works, although firstly I need to explain how the normal heart works. The picture below is a very simplified diagram representing the normal circulation. In the normal heart, oxygen-rich, or oxygenated, blood enters the left atrium of the heart via the pulmonary vein. It is pumped through the mitral valve into the left ventricle and then pumped into the aorta where it travels to the body. The blood leaving the body is known as deoxygenated blood (the oxygen having been used by the body) and this returns to the right side of the heart via the vena cava, entering the right atrium where it is pumped via the tricuspid valve into the right ventricle. It is then pumped from the right ventricle into the pulmonary artery where it travels to the lungs to collect oxygen. The oxygenated blood now leaves the lungs via the pulmonary vein and travels back to the heart and the process begins again.

Jessica's handmade heart - Little Hearts, Big Love

With hypoplastic left heart, the mitral valve is blocked (known as mitral atresia) which prevents the oxygenated blood getting to the left ventricle. However, an atrial septal defect (ASD) (a hole between the top two chambers of the heart) usually forms to allow the blood from the left atrium to pass into the right atrium where it mixes with the deoxygenated blood before passing into the right ventricle, through the pulmonary artery and back to the lungs. Because very little blood is able to get into the left ventricle and into the aorta, the aorta is underdeveloped.

Jessica's handmade heart - Little Hearts, Big LoveWhilst the baby is in the womb, there is a duct known as the ductus arteriosus connecting the pulmonary artery and the aorta and this allows blood to pass into the aorta and on to the body. However, this closes a few days after birth and so unless surgery is performed, the baby will die.

In Jessica’s case, there was an added complication known as a restrictive atrial septum, which meant that the hole connecting the top two chambers of her heart was very small and was quite likely to close soon after birth. Before birth this was less of a concern because in the womb, there is a hole between the atria, known as the foramen ovale, which allows blood to travel between the top two chambers. Again this closes very soon after birth and so in Jessica’s case, this would have meant there was nowhere for the blood to go once it entered the left atrium. She also has a ventricular septal defect (VSD) which is a hole between the bottom two chambers which allowed some blood to pass into the left ventricle and out through the aorta so her left ventricle was not quite as underdeveloped as in many cases of hypoplastic left heart syndrome.

Because of her restrictive atrial septum, Jessica’s prognosis was particularly poor and we were very lucky to be offered fetal surgery to enlarge her atrial septal defect and improve the blood flow between the top two chambers of the heart. After she was born, she needed a further procedure to widen this hole once more and to create a stent between her aorta and pulmonary artery, effectively recreating the fetal circulation in order to allow her time to grow before her next heart surgery.

Jessica's handmade heart - Little Hearts, Big Love

Jessica’s heart cannot be fixed but through a series of operations, the surgical team will re-plumb the blood vessels around her heart so that the right side of her heart does all the work (meaning that she effectively has half a working heart). The blood will be pumped from the right ventricle around the body and then the blood will return to the lungs under its own pressure (rather than being pumped back through the heart) where it will collect oxygen and then return to the heart before being pumped back around the body. This is usually done as a series of three operations known as the Norwood procedure, Glenn procedure and Fontan procedure. Jessica has had her Norwood and Glenn procedures (plus two operations known collectively as the hybrid procedure prior to her Norwood) and will be due to have her Fontan procedure in the next year or so.

About thirty years ago, there was no treatment (other than heart transplant) for hypoplastic left heart syndrome and so life expectancy is unknown. We were told when Jessica was first diagnosed at the 20 week scan, that there was a 50% chance of her living to the age of five and if she made it that far, she would have a good chance of living into her teens and early adulthood. Beyond that, we don’t know. Later, when it became apparent that Jessica’s anatomy was more complex, we were told that she was unlikely to be suitable for surgery at all and that compassionate care (making her comfortable until she passed away) would be offered instead (we had declined the third option of termination). We are hugely grateful for being given the chance for fetal surgery which gave Jessica the option of post-birth surgery and helped her to get here today.

Jessica's handmade heart - Little Hearts, Big Love

As for the future, we don’t know. Naturally we are anxious about the thought of the next procedure, but we live very much day to day and enjoy the moments. It has been a huge blessing to be able to watch Jessica grow and develop and we thank God for every day that we have had with her so far. Three years ago we would hardly have dared dream that we’d make it this far and we know how very lucky we are.

Silent Sunday

The charity Little Hearts Matter supports children with single ventricle heart conditions and their families and their October fundraising campaign encourages members to make handmade hearts to sell in recognition of the wonderful handmade hearts that our children are living with. We already had a coffee morning planned for last Saturday and so even though it wasn’t quite October, Jessica helped Mummy make some heart-shaped cheese scones and biscuits to sell for our coffee morning where we raised about £60 for the charity. Thank you to everyone who came along to support us and thank you too to Little Hearts Matter for the wonderful work they do.

 

Linking in with PODCast for What’s the Story?; Let’s Talk Mommy for Share with Me and Verily Victoria Vocalises for Post, Comment, Love:

Little Hearts Big Love
And then the fun began...

30 thoughts on “Jessica’s handmade heart

  1. zofloya11

    Thank you for sharing yours and Jessica’s story. I was in tears reading it. I cannot imagine how difficult things must be and can’t imagine how hard it must be to watch your baby go through operations like that.
    Modern medicine is amazing, and you and Jessica are amazing too.
    She is an absolute cutie!

    1. liquoriceuk

      Thank you – modern medicine is definitely amazing – we are very blessed to have Jessica here with us and hard as the journey has been at times, I would walk every step of it again just to be where we are now 🙂

  2. thereadingresidence

    I cannot even begin to imagine what you and Jessica have been through, and do live with every single day. She’s a gorgeous, happy girl, and it’s a pleasure to get to ‘know’ her via your blog and I’ll continue to follow, of course, to see Jessica fight her way through the next stage and come out smiling xx

    1. liquoriceuk

      Thanks Jocelyn – it is just normal life to us now and of course it can be tough at times but seeing how well Jessica has come on and knowing how very lucky we have been, it is all worth it x

  3. Pippa

    As strong and courageous as ever, Jessica is a blessing and she could not have had more caring and courageous parents you deserve each other, sending love as always Pippa xxx

    1. liquoriceuk

      Aw thank you so much Pippa – I don’t always feel strong or courageous but I know how lucky we are to be blessed with both our beautiful girls. Lots of love to you too xx

    1. liquoriceuk

      Thanks Sara – it is just normal life for us most of the time – we try not to think too much about the scary stuff, it’s just such a huge blessing being able to see Jessica grow and develop 🙂

  4. Mel

    This is a really informative post, hun. Every time I think about you, I cannot help thinking about how much you and Jessica have had to go through. xxx

    1. liquoriceuk

      Thank you Mel – it helped me understand more about the technical details when I decided to draw it out myself – even after more than three years, I still don’t think I’ve quite got my head around the finer details. I keep seeing lots of stuff coming up on my timehop at the moment from when Jessica was a newborn – amazing to see her now and see how far she has come, we have been so very lucky 🙂

  5. Eleanor (thebristolparent)

    What an utterly incredible little girl you have, and this post has really made me think. Thank you #sharewithme

  6. afamilydayout

    It was really interesting to read about Jessica, I’d never heard of her condition before. I’m so glad things have worked out well for you all and hope that they continue to do so.

    1. liquoriceuk

      Thank you – I hadn’t really heard of it either before Jessica was diagnosed. The last three years have been quite a learning curve but it is lovely to see how well she is doing now 🙂

  7. Jenny

    I have never heard of Jessica’s condition before I am so happy that it all went ok and she is growing up beautifully. Look at that smile and baking! Amazing. technology really does blow me away with what we can do to save and help those in need. Thanks for linking up to Share With Me. I hope to see you again soon. #sharewithme

    1. liquoriceuk

      Thanks Jenny – the skills of the surgeons and medical technology is amazing. We are very blessed to have access to such wonderful healthcare and it is such a joy to watch her grow and develop. Lovely to link up with you again 🙂

  8. Victoria Welton

    What a fascinating and amazing story which I am so glad you shared. I had never heard of this before. Bless your daughter, she is beautiful and sounds like a real survivor. You are one amazing Mum too. Thank you for linking to PoCoLo 🙂 x

  9. Sarah Howe

    This must have been so difficult and I can’t get over how strong you must have been. Those pictures of her are so sad bless her. I’m so glad she is doing so well and I think by reading this blog you definitely make the most of every second!! Lots love xx #thetruthabout

    1. Louise Post author

      Thanks Sarah – it has been a difficult journey but there have been many moments of joy along the way too and looking back definitely makes me realise how very lucky we are x

  10. Sam

    Great explanations of the biology of it all hon. You really have had to deal with so much and so has Jessica in her short life. She’s a toughy! Modern medicine is amazing isn’t it? Love her happy little face helping with the baking 🙂 Thanks so much for linking up to #thetruthabout Xx

    1. Louise Post author

      Thank you Sam, she certainly is a tough cookie and modern medicine is an amazing thing. Lovely to link up to #thetruthabout again x

  11. Bethany

    I loved reading all the posts on your page. I know your road somewhat well. My 6 year old is a hypoplastic right heart. I was glad to see her pictures and how wonderful she looks. She’s a beautiful little girl. Not too many people understand what it’s like to be a heart mommy and all the things that come with it. So I wanted to wish you and your family all the best and let you know how much your posts mean to some people.

    1. Louise Post author

      Thank you for your lovely comments Bethany and so glad that you liked my posts. Hope your daughter is currently doing well x

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