Hello, my name is Lucy Elizabeth Pearson and I was born on 8th December, 1999 in Yeovil, Somerset, UK. I did have severe congenital heart disease and malrotation (corrected in 2002) but was lucky enough to receive the gift of life - a new heart - during the Summer of 2006. We used to live in Sherborne, Dorset, but moved back to Hampshire where my mummy comes from.

 

I needed a heart transplant because I was not able to have the final stage of my three stage repair surgery. The Fontan was not an option for me because my heart failure was getting very bad; the right ventricle had become dilated and was not pumping very well. Also the fact that my left ventricle, which should act as the pumping part of the heart was so small and underdeveloped, meant that I would probably have not come through the surgery and if I had it wouldn't have been of any benefit to me.

My congenital heart problems were as follows (if mummy and daddy can remember them all!):
AVSD, TAPVD, transposition of the great arteries, hypoplastic left ventricle, pulmonary stenosis, right atrial isomerism, left inferior vena cava, heart block and asplenia. Mummy was told that I had malrotation when I was nearly 4 weeks old, and this was confirmed when another barium meal was organised in November 2002.

I have undergone two open heart surgeries, lots of cardiac catheters and had a permanent pacemaker put in place as a result of total heart block after my second surgery when I was 6 months old. I had a second pacemaker put in on 13th January 2005 and I was only in hospital for 3 days which amazed mummy and daddy as I usually take a long time to recover. We have both of my pacemakers in a jar at home now.

The operations that I have had are Stage 1 and Stage 2 of the 3 Stage repair surgeries that Hypoplastic Left Heart patients have - you can read more about these surgeries on the Little Hearts Matter Website, there is a link at the top of this page, but there have been modifications because of my other heart problems. I cannot have the third operation as my heart failure is too advanced now. Mummy and daddy were told that the operation would carry a 50-50 risk. My cardiologist finally decided that it wasn't to be in September of 2005. He then went about referring me to Great Ormond Street Hospital. We met with the Transplant Team in December of 2005. As a result of this I was placed on the Active Transplant List on 16th December 2005. I waited until the Summer of 2006 for a new heart - or a new engine as I like to refer to it.

My medications pre transplantation were Enalapril, Carvedilol, Digoxin, Penicillin, Spironolactone, Aspirin and a vitamin called Forceval Junior - I am on first name terms with the staff at my doctor's pharmacy! I am now on new medication to stop me from rejecting my new heart and will always need to take them.

Walking and eating were always major problems for me. I could only walk very short distances before I became blue and breathless. I used to rely on bottom shuffling and crawling but managed to start taking my first steps in August 2002. I am under the orthotics department at Salisbury District Hospital and have had insoles put into my shoes. This is because I walk very stiff legged and hopefully these insoles will help me to walk better.

I had my malrotation sorted out on November 13th 2002. The procedure carried out was a Ladd's Procedure. Apparently my insides were in quite a mess and poor Mr Griffiths and his team had fun sorting them out! Whilst they were doing this they removed my appendix. Mr Griffiths did this as he couldn't guarantee where it would lie after he had sorted my intestines and bowel out. Mummy and daddy are eternally grateful to the team of people who sorted out this problem. Before my operation I couldn't even eat a chocolate button without being sick. I used to get through lots of sets of clothes each day due to the sickness. It took time for people to listen, but we got there in the end!

My diet up until my stomach surgery consisted mainly of a prescription only milk which has lots of calories in it. I haven't really been able to manage solid food, but now that I have had my malrotation sorted I am trying to eat. My diet is topped up with Paediasure Plus feed. I did still suffer with sickness - especially when I was tired, but the surgery greatly improved this problem. I always make mummy and daddy really happy when I manage to eat as they have really struggled since I was born - but that is another story! My favourite food is Chinese!

As I am asplenic, I am more prone to catching chest infections, colds etc. etc. I was in and out of hospital over the first three years of my life (usually during the winter). After a course of IV antibiotics I was always fine. Every winter I have a 'flu jab just to hopefully keep me clear of catching 'flu. All of my family have one too, the doctors said that it would be a good idea. After transplant I will continue to need a 'flu jab as will anyone who has regular contact with me.

Post Transplantation

I am now able to walk a lot better than I have ever been able to in my whole life. I am having physio to help improve my walk, but we think that I will always walk stiffed legged. The doctors think that I may have suffered some form of brain damage as a baby due to the very low oxygen saturations I had. They think this is also why I have problems with my eyesight. Neither of these problems worry me and are a small price to pay, I am still here and otherwise doing really well. I can eat properly too for the first time in my life - transplantation is a fantastic thing and has improved my life beyond belief.

My care:

Southampton General:

Cardiac:
My cardiologist is Dr Keeton, my surgeon was Mr Haw.

Stomach:
The surgeon who fixed my malrotation was Mr Griffiths and the doctor who believed mummy and ran another barium was Dr Beattie. I have now been discharged from their care as they have sorted my tummy out.

Salisbury District Hospital

Eyes:
I am also seen by a lovely lady called Miss Blandford at Salisbury District Hospital for my eyesight. I have very poor sight in my right eye and have been having my left eye patched to see whether my brain could be retrained. It has worked to a certain degree, but my sight will never be very good in that eye. The lens of my glasses on the right eye is very magnified.

Othotics:
I am under the care of a nice man called Mr Wingrove. We always have a laugh with him. He is so nice!

Great Ormond Street Hospital, London

Transplant Team

 

 

I have an older half brother called Robert, an older half sister called Emily, a younger sister called Alice and a younger brother called Benjamin. None of my siblings have any heart problems. I love my brothers and sisters very much and they all look after me and love me too.

Mummy had very indepth scans at 20 weeks of pregnancy with Alice and Benjamin to check that they had nothing wrong with their hearts. Even after the scans sometimes there can still be problems i.e. holes in the heart. This is because the circulation before birth is different to that of a newborn baby and holes cannot be diagnosed whilst the baby is in the womb.