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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    Post Fontan

     

     

    Amelia’s story post fontan by Lisa Hine

     

    Amelia Isabel born 29/09/2006

    Amelia’s diagnosis after her Fontan; Tricuspid Atresia, Hypolpastic right ventricle, HRHS (Hypoplastic Right Heart Syndrome), small right atrium, enlarged left atrium, LBBB (left branch bundle block) T Wave irregularities, Small arteries, Absent SMA (superior mesenteric artery) VSD, large ASD, Pulmonary stenosis of the left artery, a pinch in her left artery and a lump obstruction. 

     

    We are now 24 months on after Amelia left Bristol Children’s Hospital following her Fontan procedure.  I am proud to say she is one of the bravest people I know and she is my daughter. 

     
    We came out of hospital and Amelia had a very shaky day and night at home, sweating lots and very weak and small.  She had lost so much weight and was very fragile.  She was sent home with fluid around her heart, with the knowledge of this Bristol asked for us to bring Amelia back on the Monday to see how things were going; she also had a 24 hour monitor fitted to observe her heart rhythm.  We came away with no change in the amount of fluid she had and with a lot of medication including being introduced to Warfarin. From Bristol we were discharged to our local hospital care provider, the Cardiac Children’s Unit at Cardiff and our everyday consultant Dr Onuzo. We saw Dr Wong who reported Amelia had mild Mitral and Aortic regurgitation and still had mild pericardial effusion over the right heart base measuring 3-4mm.  From this point on we visited Cardiff Heulwen ward for 6 weeks until they were satisfied that Amelia finally had no fluid remaining around her heart and no aortic regurgitation.  The Warfarin was an issue as they couldn’t stabilise her dose.  We had our local community nurses to support us at home, testing Amelia for her Warfarin, which proved to be extremely traumatic on every occasion.  This included a play therapist.


    Amelia had her 4th birthday and after all she has been through this birthday was very special indeed, it made me realise how lucky and blessed we were to celebrate this day with all of our family.  Amelia has become a fighter, strong beyond words and determined to live each day with such spirit.

     
    Her recovery was very slow, some parents had experienced their children coming on in leaps and bounds after a Fontan, but Amelia took time to adjust, however, this didn’t stop her personality becoming stronger.  In October 2010 her check up showed her mitral regurgitation now trivial. A month later we were back in the nurse led clinic and Amelia had a trace of aortic regurgitation back.  For the next 6 months we watched Amelia try so very hard to lead a normal life.  We had a Christmas together and celebrated our other children’s birthdays.  I must mention my other children at this point, how supportive and strong they have been throughout this time and I am so very proud of all 5 of them.  Still today we are a very strong family taking each day at a time. 

     
    Amelia’s wish was to visit Disneyland Paris so we did as a whole family, it also fell on her younger sisters 2nd birthday.  We had an amazing few days and watching their faces light up was magical.


    April 2011, our check up with Dr Onuzo.  Amelia now had no mitral or aortic regurgitation, but an enlarged left atrium, and T wave irregularities.  Amelia had been to nursery and attended the Easter bonnet parade.  This was fantastic to watch, to think she had come this far when we were told her life would be very short. We now have to attend blood work for her kidney function (due to being on Warfarin) every 6 months.

     

    Life goes on and every step counts, every breath taken, every word said and everything you do makes a change in someone’s life.  On the 25th July we attended an appointment at Great Ormond Street hospital for Amelia, as her recovery was slow and a second opinion was needed.  We saw Dr Phillip Rees.  He suggested to us and the Cardiff team that Amelia would benefit from being started on ACE inhibitors and diuretics. From his findings we were called in with Amelia to attend Heulwen Ward to go onto the Captopril trial. She tolerated this very well and is now taking Enalapril to improve her heart function along with frusomide and her Warfarin.

     
    September 2011 and yes Amelia started school, albeit for only 3 hours a day she is at school a massive milestone for her and for us.  She is doing so very well keeping up with her peers and showing us all how it’s done, you NEVER give up.  Another check up with Dr Onuzo, one I couldn’t attend as I was ill and didn’t think the other CHD children would benefit from me passing on my germs.  Amelia was great during the examination with her Dad, no change in most things apart from an increase in her enalapril.

     
    And oh yes I found out I am expecting baby number 6, a healthy baby boy due June 6th 2012.


    Christmas 2011 and this time not so good; Amelia came into our bedroom at 3am crying, she was passing blood in her urine and not just a little, a lot. We went straight to hospital and after bloods, drips and antibiotics it was established she wasn’t in kidney failure.  We got home that evening and watched our children open their presents at 8pm.  What true star’s they all were waiting patiently for Amelia to come home.  The love in our home for the next few days was incredible again, so grateful to have Amelia home, although very emotional at the same time.  Amelia made the comment about this time on how ‘she wishes she had a normal heart like her friends’....TEARS................................


    We have seen our eldest daughter move to Rome for a year to teach English, our next daughter start a university degree in English, our son start comprehensive school and our youngest daughter start playgroup, this is all alongside Amelia starting school and coping with life with half a heart.  It’s been a very busy 6 months.  During this time also we have changed cardiologist at Cardiff to the very first one I saw when I was pregnant with Amelia; Dr Uzun.  We’ve always had so much respect for this man and when we went to see him in February this year even more respect.  He went through Amelia’s case from fetal diagnosis to the present day.  Amelia has had a 24hour monitor for 2 weeks, a DMSA and scan of her kidneys which were clear. We are waiting for an appointment for a 6 minute, 500 metre walk test with saturation monitoring. From our latest appointment it has been noted that Amelia has a cardiac output of only 24-30% which should be at least 60-70% after surgery.  There are other heart issues but this main one is what Dr Uzun wants to deal with first.  He is confident, even if it’s through more or a change in medication, that he can get Amelia to this result.  It may mean another catheter and tests but he said he will look after her and make sure she can get the best out of her life.  This is the first time a cardiologist has acknowledged to us that they really truly care about Amelia and he called her his princess.  I am sure all little girls he takes care of are his princess’s, his passion is remarkable.

     

    So here we are today, Amelia attends school and is now reading, she is an inspiration to me and to other CHD families.  Amelia will celebrate her 6th birthday this month. During the summer holidays she has had 5 swimming lessons and has been awarded her first certificate. We also took time to pause on the 23rd August as it has been 2 years since Amelia’s fontan, remembering how grateful we are for Mr Caputo and the surgical team at Bristol Children’s hospital.  We refer to this date at Amelia’s fontannversary.

     
    During this last 20 months we have applied to become a charity after the success of our ball on 19th February 2011, raising over £10,000. We gained charitable status on 9th September 2011.  Amelia has given me the passion and drive to support children who suffer with congenital heart disease and their families.  Although life with Amelia has been the hardest road I have been on, it has also ended up being one of the most positive.  Enjoy and embrace every second, feel life from within and hold your children even closer.  EVERY child counts. As a family we have Love, Faith and Strength.......

     

    Amelia and Noah

     


    Amelia and Noah June 2012 (who was born 23 May 2012)

     

    Amelia Swimming Certificate

     

    Amelia swimming certificate - August 2012

     

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