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Amelia official logo Amelia Lee - Tetralogy of Fallot

Medical History Medical bracelet Before discovery Pre-surgery briefing Surgery Day 2006 1st Operation @ GOSH 2nd Pre-surgery @ GOSH 2nd Operation @ GOSH Heart Assessment @ GOSH News about Amelia Amelia doing sports Shaolin Kung Fu Open water swim Rock climbing Fun playing scooter Playing on the beach Ice skating Playing with snow Painting experience Fruits picking Found Little Brown Bat Amelia Gardening Climb Mount Kinabalu Donate
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Medical History

 

amelia_patient_1271

Amelia is baby number 1271 receiving heart treatments from Great Ormond Street Hospital London United Kingdom.

Medical History of Amelia since she was born, from 2005 to Date.

Date

Medical History

06.12.05

Amelia Lee was born at Royal Free Hospital, North London at 17.13 and she weight 3.6 kilograms (7lb 15ozs).

 07.12.05

Had full check up at the baby clinic at the same hospital and was discharged on the same day.

23.01.06

Amelia had her 6 week old check at Highgate Group Practice, her doctor noted that she has a loud systolic murmur and appears asymptomatic. She was being referred to a local hospital at North London – The Whittington Hospital.

24.01.06

Pediatrics at The Whittington Hospital confirmed Amelia was born with a heart defect called Tetralogy of Fallot and referred her to Great Ormond Street Hospital for children in Central London.

27.01.06

Amelia’s first outpatient appointment at Great Ormond Street Hospital (GOSH). Cardiologists confirmed her heart condition required corrective heart surgery. Her saturation was 100%.

20.03.06

Follow up appointment at GOSH. To this date she has had no blue spells and gaining weight. Her saturation was 98%.

31.03.06

Department of Cardiology at GOSH suggested Amelia should have her heart surgery within the next three months.

12.04.06

She was placed on cardiac surgery waiting list.

05.05.06

Pre-operative appointment at GOSH to complete all the pre-admission investigations prior to the surgery date.

23.05.06 (Tuesday)

Amelia had had her open heart surgery at GOSH. The surgery took about 8 hours and was discharged on 03.06.2006.

17.07.06

Amelia’s first post surgery checks up back at GOSH (after 6 weeks) and Her recovery was clinically well. She weight 7.14 kilograms and height 66.20cm.

There is mildly increased velocity through the right ventricular outflow tract and no further tests performed as Amelia is growing well with a good exercise tolerance.

 06.11.06

Follow up appointment at GOSH. Amelia has made good progress clinically. However, there is non-negligible degree of residual right ventricle outflow tract obstruction and the echo diagram in the clinic today was technically difficult and yielded results that were difficult to interpret because Amelia was extremely upset.

12.02.07

Follow up appointment at GOSH on right ventricular outflow obstruction. The scan result showed a right ventricular hypertension with velocity just under 4m/sec.

Proposed to perform cardiac catheter within the next 6-8 weeks.

05.03.07

GOSH reported that the obstruction developing underneath the aortic valve was related to the valve itself, but it looks as if there are muscle bundles underneath the valve which make balloon dilation procedure unhelpful.

14.05.07

GOSH assessed Amelia’s heart development and she is very well. Her echo shows a gradient of 3.9 through the right ventricular outflow tract. It has changed since February 2007.

10.09.07

Amelia’s weight was 11.1 kilograms and her height 80.9cm.

GOSH noted the right ventricular outflow obstruction was due to muscle bundles underneath the valve rather than obstruction at the valve itself. It is likely that Amelia will require further surgery to alleviate her right ventricular outflow obstruction. (Velocity of 3.5m/sec).

Suggested further outpatient review in 6 months’ time and recommend measures to prevent endocarditis.

14.01.08

GOSH suggested to perform a cardiac catheter and angiogram to get information about the level of obstructions and the patency of the artery to the left lung and also to see if the narrowing in the blood flow can be stretched out with a balloon catheter.

12.02.08

Pre-Operative Appointment for cardiac catheterization at GOSH.

27.02.08

Amelia was admitted to GOSH for cardiac catheterization procedure.

10.03.08

Follow up appointment at GOSH

22.09.08

Amelia’s peak velocity on the right ventricular outflow tract was 3.8m/sec. The Consultant suggested to put her case for further discussion with the GOSH surgical team meeting.

23.03.09

Follow up Appointment and GOSH proposed to discuss Amelia’s heart condition in Cardiac Planning Meeting.

09.04.09

GOSH placed Amelia next surgery on waiting list and parents requested the routine surgery is scheduled after mid June 2009.

04.06.09

Amelia's 2nd open heart surgery is on 26 June 2009 and pre-admission check is scheduled on 11 June 2009.

 11.06.09

Pre-surgery checked up at GOSH - ECG, X-ray, Blood sample taking, saturation, blood pressure etc.

26.06.09 (Friday)

Amelia's surgery was scheduled at 11am and it took about 4.5 hours.After the surgery, she was taken to Intensive Care Unit at Cardiac Wing at Great Ormond Street Hospital.

She was breathing by her own, without the support of the machine except for oxygen mask and half conscious.

29.06.09

Amelia's heart recovery was progressing very well and after ECG and Ecodiagram scan showed promising results, Amelia was allowed to go home. The Cardiologist advised Amelia to stay home and no outdoor activities for at least a week. Her heart rate was between 145-150.

07.07.09

Amelia was taken to A&E department at a local hospital for chest infection. She was admitted to the hospital for 48 hours antibiotics and close monitoring.

10.07.09

 Amelia was discharged from the hospital.

26.07.09

Amelia's heart rate back to normal to 110 and below.

10.08.09

Amelia was very happy to see all her friends at the nursery.

29.03.10

Routine check up at GOSH outpatient clinic. Amelia was looking well from the cardiac viewpoint. The doctor has arranged for Amelia to have a 24-hour ECG tape to assess whether the episodes of bigemini are reduced during her activities.

12.05.10

GOSH invited Amelia to join the Tetralogy of Fallot research program.

27.09.10

Routine Check up at GOSH outpatient clinic. Amelia was doing well and they proposed to review her condition to once every 12 months and she may require another surgery to fix her valve when she is in her teen.

26.09.11

Routine Check up at GOSH outpatient clinic. Amelia's heart development was excellent and they will review her heart development in 12 months around August 2012.

19.10.2012

Amelia has a massive nose bleed at 1am and she vomit with blood. Ambulance took her the St Thomas Hospital Emergency to check whether she has internal bleeding.

She was discharged from Hospital at 4am and Amelia rest at home on that day.

26.11.2012

Routine check at GOSH. Echo results showed leaking valve changes slightly compared to last year. ECG results showed Amelia has irregular heart beat. Nothing to worry about at this stage. Her next review is in 12 months. Doctor said Amelia is free to do any sport activities she likes.

Amelia participated in the Paediatric Cardiac Genomics Consortium CHD Genes Research program carried out by GOSH. The nurse took Amelia's blood sample and sent it to US for analysis. She was given a colourful sticker for being brave.

08.12.2012

Amelia has another massive nose bleed and flu. she felt really tired and been sleeping most of the day.

10.12.2012

Seen GP. Amelia has throat and chest infections and been given 5-day course of antibiotic.

25.11.2013

Amelia completed ECHO (heart scan) and ECG ( heart beat reading). The cardiologist said everything is as expected and encourage her to continue with her triathlon if she wishes. The cardiologist and the trainee medical doctor both were impressed with Amelia's ability to do multi sports and with her scan results. The hospital will contact Amelia again when the Portable ECO machine become available. Amelia requires the machine to be fixed on her body for 24 hours to take reading of her irregular heart beats.

17.12.2013

Amelia's dental appointment. Assessment was fine. 

08.01.2014

 Amelia attended allergy assessments at Cardiff Hospital.

24.01.2014

Amelia went to GOSH to fix the 24hours ECG portable machine on her body. 

21.03.2014

GOSH proposed further assessments using magnetic resonance imaging (MRI) scan without anaesthetic and evaluate her heart beats when she exercises.

06.06.2014

Amelia is now 8 years old. She recently complaint that sometime she felt like a bubble pop inside her heart and it was painful for just split seconds. A parent from a facebook group who has a girl with similar symptom mentioned her girl complaint of the same when she was 7 years old and it was her valve was leaking more and she has had valve replacement within 6 months.

Contacted GOSH to inform about Amelia's complaint of the pain by letter and telephone.

06.08.2014

GOSH arranged full day assessments for Amelia and this includes exercise test (cycle), MRI, ECHO (heart scan) and 24 hours ECG (heart beat reading).

The exercise test was stopped as Amelia has continuously three irregular heartbeat and it is not recommended to continue without cardiologist supervision.

The results from all these tests will be discussed among cardiologists and decide the next treatment for Amelia.

19.11.2014

Amelia complaint of a sharp pain like a knife stab in her heart when she breathe in and she felt her head was heavy. The symptom comes and goes. She screamed for mummy for help at 5am.

Made contact with the NHS helpline and the GOSH Cardiology clinic. The Cardiologist secretary suggested to take Amelia to see her doctor as soon as possible.

Amelia described her pain to her doctor and suggested her to describe the same to the Cardiologist next Monday. In the mean time her doctor will also contact GOSH.

Her doctor said the sharp pain could be caused by an extra heart beat or something else.

Amelia has irregular heartbeat. Her doctor said irregular heartbeat could be either missing a heart beat or having an extra heart beat. Missing a heart beat is not a problem but having an extra heart beat could be a problem.

24.11.2014

GOSH Appointment.

Cardiologists said Amelia's heart development is interesting. Her ECG reading shown bigeminy since her second surgery and the cardiologists always considered that Amelia is asymptomatic but in fact she does describe episodes when she gets chest pains and looks down into her precordial area and sees her heart beating fast. During her exercise test she deteriorated from bigeminy into a short run of unimorphic VT. They are not sure her chest pains are real tachycardias but in the context of exercise test, they should attempt to treat for her ventricular ectopic beats.

She can continue with sports activities but she must stop exercising if she has chest pain or out of breathe or feel dizzy.

Amelia was prescribed with a medication called beta-blockers for her abnormal heart rhythm today. Amelia is to take beta-blockers twice a day between 10 to 12 hours a part, one in the morning and one at night. The pharmacist said each intake is effective for about 8 hours.

Beta-blockers comes in liquid form and tablet. Amelia is taking the tablets and she was excited when the pharmacist showed her how to cut the beta blockers tablet into half using tablet cutter. This was a novelty to her. She asked mum to let her manage her own medication.

Further 24 hours ECG will be arranged for Amelia to assess whether beta-blockers is effective. If it is, then Amelia will continue with the medication.

If the ECG results shows no improvement to her irregular heart beats then the Cardiologists will consider performing Electrophysiological (EP) test to find out what part of her heart is causing the change in rhythm. This procedure is similar to catheterisation where a tiny camera tube is inserted through the skin into a blood vessel in her groin or neck or arm.

If the EP procedure can fix the abnormal heart rhythm, Amelia would not be required to continue with the beta-blockers medication.

The MRI Scan result showed Amelia's leaking valve development is as expected. Open heart surgery is required to fix the valve in the future but can wait 3-4 years later.

Amelia's 12-month routine heart review is shortened to every 6 months. No definite dates for appointments of the above procedures yet.

 09.12.2014

Flu jab appointment at GP.

Cardiac Screening Tests at GOSH.

3rd time 24hours ECG to take Amelia's heart rhythm this year. This time is to assess whether the beta-blockers is effective and to see whether any improvements.

 15.12.2014

 Eye test. Result showed require glasses.

 05.01.2015

Amelia has massive nose bleed, high temperature and vomiting in the morning.

 29.01.2015

Amelia went out to play at school. she felt too cold then she experienced three pop episodes in her chest, her hands and feet and lip turned blue. She has high temperature, blurred vision, shivering, felt dizzy and could keep her balance when walking.

The incident happened at about 10am in the morning. She was taken home to rest, she slept whole day and woke up about 7.30pm. She look pink and back to herself. 

 16.02.2015

Did another 24 Hours ECG.

 15.03.2015

GOSH Increases Amelia's beta blockade dosage intake to one tablet in the morning and half a tablet in the evening.

 01.06.2015

GOSH heart review appointment @14.40

Amelia's heart assessment results revealed beta blockade medication not suppressing her ectopic beats. In other words, not effective. Cardiologists put Amelia forward for an electrophysiology study. she is put on waiting list for the study mean while a metabolic exercise test will be arranged soon.

 20.07.2015

 Metabolic Exercise Test (cancelled due to chickenpox)

 07.09.2015

 Metabolic Exercise Test

 29.10.2015

 5-hour Key-hole surgery to fix irregular heartbeat through EP study.

 09.12.2015

 24-hour ECG recording

 15.02.2016

Metabolic exercise test

23.04.2016

Eye test.

12.05.2016

Amelia has blisters on her face and body looked like chicken pox but it was not. Doctor gave her 1 week oral antibiotic and skincare creams. She rest at home for 2 days.

19.05.2016

GP reviewed her skin condition. All blisters have gone and she continues to use the prescribed skincare creams.

23.05.2016

Outpatient appointment with GOSH cardiologist.

The cardiologist was very happy with her heart development progress. The results from the 24 hours ECG and metabolic tests showed that the Electrophysiological (EP) 5 hour key hole surgery was successful. Her irregular heart beat cut down to 1% compared to before the EP procedure.

The cardiologist will arrange another set of MRI, Echocardiogram, 24 hours ECG to assess her leaking valve to see when is a good time to have her 3rd open heart surgery to (very likely) replace her valve.

Two other juniors cardiologists present and listened to Amelia's heart beat pattern.

These tests will be completed before the next heart review in 9 months time.

10.08.2016

 Metabolic test, MRI, ECHO &24 hours ECG + monitor

22.09.2016

Cardiologists seen MRI scan and echo tests results, they showed that the heart is working reasonably well though the pump chambers have a very slight impaired function. This is the case on both sides of the heart; left and right. (This is new finding).

The amount of leak from the pulmonary valve is not excessive but will need to be carefully monitored. The level of right ventricular enlargement is acceptable.

Cardiologists agree that they will keep a very close eye on Amelia's heart development, but there is no indication to do anything else. For instance, there is no indication to perform a surgical replacement of the pulmonary valve which is leaking at this stage although this may be necessary in the future.

27.02.2017

24 hours ECG monitor.

23.11.2017

Cardiologist reviewed Amelia's Echo scan result obtained on the day. The result showed no irregular heartbeat at all and her heart chambers are slightly bigger and the level of leaking at the valve is moderate. GOSH will continue to monitor her heart. The Cardiologist encouraged Amelia to continue with her martial art.

 09.08.2018

 GOSH Appointment.

 
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Thank you for your generosity and support with the charities that work hard to help babies born with heart defects.

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Contributions made by Amelia, her parents together with the sponsor:

Total Donations raised for charities £2,039.92

For Great Ormond Street Hospital for Children Charity and The Sick Children Trust by participating in the following activities:

  • SwissAlpine Kids Run 1.4km 2015 by Amelia
  • Henley On Thames Kids Triathlon by Amelia herself 2014
  • Westminster Mile Run by Amelia herself 2014
  • Fun Triathlon by Amelia herself 2013
  • 2010 Bupa London 10000.
  • British Heart Foundation Hyde Park Jogs 2010
  • 2011 Adidas Women's 5k Challenge at Hyde Park London.
  • Climb Mount Kinabalu expedition on 1 December 2011.
  • Bupa London 10K 2012

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