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Sunday, 5 November 2017

Our Experience of NHS Care for Heart Children

Our son was born with half a heart. To be told that our baby had been born with a condition that was "incompatible with life" was a huge shock especially as we did not have an antenatal diagnosis.  He was born at our local hospital.  When he was just hours old he began to struggle breathing and was transferred to the Special Care Baby Unit.  We were told that this was serious and we needed to name him quickly.  We called him Danny.  The following day, he was transferred to Cardiff, where he was diagnosed with Hypoplastic Left Heart Syndrome.  You can read more about his birth story here.  

We will always be grateful to our local hospital for recognising that he needed extra help and for organising the transfer safely.  In Cardiff, once we had a diagnosis we had hope.  They gave us three options to choose from:  comfort care, a heart transplant or a series of heart operations.  As a heart transplant was unlikely we opted for the surgery.   The chances of survival were low.  However without surgery there was no chance at all so we held on to this glimmer of hope and were so grateful to all the paramedics, nurses, doctors, surgeons, staff and everyone who helped our baby.  Danny was transferred to Birmingham.  Just two days post c-section I had to discharge myself from NHS care as he was going to the children's hospital.  It was worth it to be with my son while he needed me.  The community midwives still visited me at the hospital to check my stitches and to make sure I kept up with my Clexane injections.

Danny survived his first major open heart operation and a few weeks later we got to bring our miracle baby (with a re-plumbed heart) all the way home.  At four months old we returned for his second open heart surgery which again was successful.

A few years later we had to bring a school aged Danny back for his third open heart surgery- the Fontan.  It was so hard bringing a seemingly healthy child to hospital to go through this hospital treatment.  He was starting to tire easily, was always blue so we knew he needed the surgery but it's never easy.


We were in hospital for a long time as Danny had to keep chest drains in until all the fluid was clear and he had to adjust to his "new circulation".  Even though he was in pain, he loved walking down the corridor to feed the fish every day.

People ask us if we mind having to travel so many hours for treatment but Danny's treatment is so specialised I would prefer to travel miles and have him treated by experts who know what they're doing than receive less knowledgeable care on our doorstep.  At our local hospital we often have to teach them about Danny's condition.  Some nurses worry about his lower than normal oxygen saturation levels but these are normal for him.  When Danny went into heart failure aged two, I recognised the signs immediately as I watch for them daily but local doctors initially put his puffiness down to toddler chubbiness.  It can be hard to stand your ground as a patient's parent but once he was transferred to Cardiff we were reassured that we had done the right thing and he got the correct treatment.

Danny will never be cured,  his heart can never be fixed.  Instead, cardiologists keep an eye on his heart and do repair work when needed.  Some children and adults with HLHS eventually need a pace maker or heart transplant.

On Danny's thirteenth birthday we returned to Birmingham for Danny to have his stents enlarged.

I admit that it gets harder as he goes through each procedure.  No parent wants to put their child under the knife but we know it's vital to keep him alive.  I wish I could go through the pain for my son.  We are so grateful that thanks to the NHS we still have our gorgeous boy with us today.  Danny is currently in transmission to adult care and we're hopeful that with the support from our new transitional Cardiac Liasion Nurse and Little Heart Matters that this will go smoothly for us all as a family but we'll miss being under the care of BCH as they've been a huge part of our life and we owe them everything. 

It's never an easy journey and we have had plenty of help along the way.

Support For Families of Heart Children

  • Cardiac Liaison Nurse- we were assigned a Cardiac Liasion Nurse in Birmingham.  She was wonderful and gave us details of relevant charities.  We currently have a Cardiac Liaison Nurse in Cardiff who we still use regularly for advice as well as Danny's anti coagulation monitoring.  They can help liaise with schools, hospitals and so much more.  Whenever we book a holiday the first person we tell is our lovely CLN as she arranges our "Safe to Travel"and "Oxygen" forms.  We also met a Cardiac Social Worker after Danny's first operation who informed us of all the support available for heart families.
  • Heart Charities- for general congenital heart disease the Children's Heart Federation (CHF) and Heartline offer support.  There are also smaller more specialist charities available too.  Little Hearts Matter (LHM)  provide support and information to anyone affected by the diagnosis of single ventricle heart condition (such as Hypoplastic Left Heart Syndrome).  They have been the greatest support to us.  We have met many families through them and Danny has enjoyed opportunities such as PGL trips with his heart friends.
  • Due to the complexity of heart conditions successful treatment is not guaranteed however good quality and safe treatment should be.  In order to keep high standards of service it's important to keep the Care Quality Commission and NHS informed if your child receives poor care.  This helps hospitals to raise standards and keep the service safe for all.  We made sure we took part in the recent  CHD Consultation as it's only possible to improve the service if all users speak up about their experiences.
  • Devastatingly improvements in congenital cardiac services came too late for eleven families at Bristol and tragically children died or were left with severe disabilities allegedly as a result of poor standards. These families were awarded compensation and services were reviewed making them safer, more open and accountable, for the next generation of heart kids.  Read more about NHS Compensation from Your Legal Friend here.  
I'm a member of a lot of heart groups and forums online.  The care and treatment varies enormously worldwide.  We are so lucky in the UK that our treatment is available on the NHS.  

It's important that we all keep sharing our experiences to ensure that there is an excellent standard of care nationwide.

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1 comment

  1. I can't imagine going through all that worry with one of my sons, must have been so shocking to hear that. Thanks you for sharing your story. I'm lucky I have healthy children and I think I have to stop winging about how they wind me up and be great full that their healthy


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