Amelia was born with a congenital heart defect called Tetralogy of Fallot. She has been receiving her heart treatment from Great Ormond Street Hospital, a children specialist hospital located in Central London in England. Amelia is the baby number 1271 receiving heart treatments the hosipital. This is amelia’s medical history since she was born to present date. This medical history summary would give you an idea a lifestyke of a child born with a heart condition that require on going medical care. Generally, Amelia is living well and she does not let her birth defect stop her from thriving in life.
1st day on earth
My 1st open heart surgery
I like to play with my shoe
I glide when I swim
I conquered a triathlon
Enjoy my sweet life
06 Dec 2005
Amelia Lee was born at Royal Free Hospital, North London at 17.13 and she weight 3.6 kilograms (7lb 15ozs).
07 Dec 2005
Had full check up at the baby clinic at the same hospital and was discharged on the same day.
23 Jan 2006
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 Jan 2006
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 Jan 2006
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 Mar 2006
Follow up appointment at GOSH. To this date she has had no blue spells and gaining weight. Her saturation was 98%.
31 Mar 2006
Department of Cardiology at GOSH suggested Amelia should have her heart surgery within the next three months.
12 Apr 2006
She was placed on cardiac surgery waiting list.
05 May 2006
Pre-operative appointment at GOSH to complete all the pre-admission investigations prior to the surgery date.
23 May 2006 (Tuesday) surgery day
Amelia had had her open heart surgery at GOSH. The surgery took about 8 hours and was discharged on 03 June 2006.
17 Jul 2006
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 Nov 2006
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 Feb 2007
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 Mar 2007
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 May 2007
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 Sep 2007
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 Jan 2008
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 Feb 2008
Pre-Operative Appointment for cardiac catheterization at GOSH.
27 Feb 2008 (Wednesday) surgery day
Amelia was admitted to GOSH for cardiac catheterization procedure.
10 Mar 2008
Follow up appointment at GOSH
22 Sep 2008
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 Mar 2009
Follow up Appointment and GOSH proposed to discuss Amelia’s heart condition in Cardiac Planning Meeting.
09 Apr 2009
GOSH placed Amelia next surgery on waiting list and parents requested the routine surgery is scheduled after mid June 2009.
04 Jun 2009
Amelia’s 2nd open heart surgery is on 26 June 2009 and pre-admission check is scheduled on 11 June 2009.
11 Jun 2009
Pre-surgery checked up at GOSH – ECG, X-ray, Blood sample taking, saturation, blood pressure etc.
26 Jun 2009 (Friday) surgery day
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 Jun 2009
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 Jul 2009
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 Jul 2009
Amelia was discharged from the hospital.
26 Jul 2009
Amelia’s heart rate back to normal to 110 and below.
10 Aug 2009
Amelia was very happy to see all her friends at the nursery.
29 Mar 2010
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 May 2010
GOSH invited Amelia to join the Tetralogy of Fallot research program.
27 Sep 2010
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 Sep 2011
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 Oct 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 Nov 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 Dec 2012
Amelia has another massive nose bleed and flu. she felt really tired and been sleeping most of the day.
10 Dec 2012
Seen GP. Amelia has throat and chest infections and been given 5-day course of antibiotic.
25 Nov 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.
7 Dec 2013
Amelia’s dental appointment. Assessment was fine.
08 Jan 2014
Amelia attended allergy assessments at Cardiff Hospital.
24 Jan 2014
Amelia went to GOSH to fix the 24hours ECG portable machine on her body.
21 Mar 2014
GOSH proposed further assessments using magnetic resonance imaging (MRI) scan without anaesthetic and evaluate her heart beats when she exercises.
06 Jun 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 Aug 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 Nov 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 Nov 2014
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 Dec 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 Dec 2014
Eye test. Result showed require glasses.
05 Jan 2015
Amelia has massive nose bleed, high temperature and vomiting in the morning.
29 Jan 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 not 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 Feb 2015
Did another 24 Hours ECG.
15 Mar 2015
GOSH Increases Amelia’s beta blockade dosage intake to one tablet in the morning and half a tablet in the evening.
01 Jun 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 Jul 2015
Metabolic Exercise Test (cancelled due to chickenpox)
07 Sep 2015
Metabolic Exercise Test
29 Oct 2015 (Thursday) surgery day
5-hour Key-hole surgery to fix irregular heartbeat through EP study.
09 Dec 2015
24-hour ECG recording
15 Feb 2016
Metabolic exercise test
23 Apr 2016
12 May 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 May 2016
GP reviewed her skin condition. All blisters have gone and she continues to use the prescribed skincare creams.
23 May 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 Aug 2016
Metabolic test, MRI, ECHO &24 hours ECG + monitor
22 Sep 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 Feb 2017
24 hours ECG monitor.
27 Oct 2017
Dentist put temporary filings in two big tooth while making enquiry with Amelia’s Cardiologist whether she requires antibiotic before dental treatment. The Dental subsequently referred her to hospital for treatment due to her complex heart condition.
23 Nov 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.
Her cardiologist mentioned that Amelia does not require antibiotic before dental treatment.
14 Feb 2018
Amelia complaint of tooth pain on one of her tooth with temporary filing. The left side of her face was a bit swollen and she has high temperature. Called 111 and was advised to get emergency dental treatment. The Dentist removed the root of the tooth. The process was painful for Amelia but after that she was happy as she feels no pain.
The dental requires confirmation in writing from her Cardiologist that Amelia does not require antibiotic before tooth extraction.
16 Feb 2018
Went to see the Dentist again to make sure her tooth pain has gone and everything is ok. Another referral was made, hoping to speed up the process of her getting dental treatment at a specialist Dental Hospital. The dentist recommend Amelia to get dental treatment at a specialist dental hospital due to her heart condition, in case of emergency, the hospital would have the necessary experts and equipment to handle the situation.
11 May 2018
Eastman Dental Hospital performed thorough dental assessment and multiple X-ray. They confirmed the bad tooth (the 2nd one) currently with temporary filing is to be extracted as soon as possible as the X-ray showed there is a slight infection around the root of the tooth and the Paediatric Dentist said it is not a good idea to have the infected tooth there for any longer with her heart condition. Her tooth will be extracted under general anaesthetic and sedation with gas.
The Paediatric Dentist explained why this procedure cannot be done at normal dental practice as they usually do not have the necessary equipment. Eastman Dental Hospital has all the necessary equipment and experts and also the hospital is just around the corner of GOSH and if there is an emergency during or after tooth extraction, they could call GOSH to get help quickly.
If Amelia has a flu-like symptom, please contact the Dental Hospital for emergency treatment. Her GP is to be informed of her tooth infection so that they are aware of it and know what to do.
The Hospital recommend Amelia ;for specialist Orthodontist assessment too. Usually they will wait for Orthodontist assessment and recommendation but in Amelia’s situation, the bad tooth already infected so they are going to go ahead with the extraction under urgent request.
11 Jul 2018
Visit to Dentist to re-do filings, existing ones came off.
09 Aug 2018
GOSH Appointment at 12pm. The Cardiologist suggest to arrange MRI scan to get a more accurate reading of the level of leakage of Amelia’s valve. Amelia’s care would be transferred to Cardiologist that take care of Teenage heart children from next check up onward and her existing Cardiologist would be around to ensure smooth transition.
10 Aug 2018
Tooth extraction at Eastman Hospital. Amelia was given “Happy gas”. Happy Gas is a safe and effective sedative agent. It is a mixture of Oxygen and Nitrous Oxide to help Amelia to relax. She waited for 1 year for this to happen. Worked with 3 Dental practices and two emergency visits and call to NHS 111 for help to fix her pain and swelling along the way. Amelia was so glad that her infected tooth finally out for good. For the next couple of days, Dentist suggest to watch out for infection and excessive bleeding, and also consider not to go sparring tonight as it may cause bleeding. Do not brush her teeth tonight, take some painkiller if necessary and starting tomorrow rinse her mouth with a warm water mix with a teaspoon of salt couple of times throughout the day.
12 Aug 2018
Tooth socket infection. Call 111 was booked an emergency appointment to see local Dentist. Things did not seem right there, Call 111 again, another emergency appointment booked for Dental care at a hospital. Local dentist said don’t go to local dentist with her heart condition. Hospital dentist said try to ask for hospital appointment for her Dental care because her condition is a tricky one.
07 Dec 2018
GOSH called for cardiac investigations – MRI, ECO, Metabolic Exercise Test and 24 hours ECG. All tests were conducted successfully and now wait for the results
Eastman Dental Hospital Orthodontist assessment. No further tooth extraction to minimize risk of health due to her heart condition. Pediatric dentistry department will continue with dental care. Orthodontist treatment will begin soon.
17 Dec 2018
Visit London GP for second opinion to assess the current skin condition – eczema. Continued to use prescribed skincare cream only.
It was not necessary to take any medication for it. She has eczema for 12 years she did not need any medication why suddenly (new GP) she was prescribed with medication (antibiotic tablets) on top of the skincare cream. There was no blood test to confirm what caused the skin irritation. The stress and upset caused to Amelia, by the medical staff and doctors belong to that the establishment was unnecessary. We live and we learn, Amelia has been removed from there now.
Do not just accept what doctors told you, if it does not make sense, get second opinion.
There are other factors to look at as well, the temperature of the room, too hot could be an issue, the washing liquid used for laundry, the food ate etc.
18 Feb 2019
Eastman Dental Hospital – Peadiatry Dentistry department. Dental treatment postponed due to the fact that there was a recent cardiac investigation done by GOSH and the Dentist would like to make contact with GOSH to see if antibiotic require for the dental treatment due to high risks of bacteria infection and extra care must be considered. Amelia’s skin condition on her face and around her neck also a bit red and dermatology treatment may be the way forward. The hospital will re-arrange Amelia be back for treatment after couple of weeks after they have confirmation from GOSH.
28 Mar 2019
Eastman Dental Hospital – Peadiatry Dentistry department.
05 Jul 2019
Dental assessment @ CLCH. Result was good.
07 Aug 2019
10am Appointment @ Specialist Dental service. Dentist put “fissure sealant” to seal her teeth to protect them and to prevent decay, and Flouride varnish on the surface of the teeth to strengthen the tooth enamel, prevent sensitivity, erosion and also tooth decay.
Recommended safe snacks and drinks.
- Vegetables – raw carrots, cucumber, celery, cheery tomatoes.
- Fruits – apples, oranges, plums, pears, peaches, pears, banana, kiwi and strawberries.
- Plain popcorn.
- Crackers – cheese spread, cheese, margarine.
- Cheese – Hard cheese.
- Savoury sandwiches – cheese spread, marmite, meat, humus, peanut butter.
- Between meals only water (not flavoured water or fizzy water)
- At meal time’s water, milk, pure fruit, diluted juice with water.
08 Aug 2019
GOSH appointment at 1.50pm. Transition to teenagers cardiologists. Review every 12 months from now on. The technology is improving, the cardiac surgeons may be able to replace heart valve using keyhole surgery in the future. If Amelia’s heart valve is functioning well, when reach the time she require a new valve, she may not require open heart surgery. fingers crossed. Keyhole surgery is less risky than open heart surgeries.
20 Aug 2019
9.15am Dental – Orthodontics @ Eastman Dental Hospital.
12 Sep 2019
Don’t underestimate what a basketball can do to your finger. My finger is numb and swollen and started to bruise as well. Called 111 was told to go to A&E within one hour if any other symptoms start to show, call 111 back.
My finger is strong, just need a bit of tender loving care, that’s all. I was able to do my homework earlier.
I will bring a book with me to read while waiting.
08 Oct 2019
Eastman Dental Hospital – Orthodontics
01 Nov 2019
St Mary Hospital A&E Department for redness to the face and itchy.
14 Nov 2019
UCL Hospital A&E Department – Face swollen and red around eyes, below and up to mouth , symetrical. Dematology review for her eczema is to follow. To see GP with the hospital discharge report the following day.
15 Nov 2019
Eczema review by GP and referral made to see a Dermatologist.
02 Dec 2019
A&E UCL Hospital – woke up with puffy eyes, swollen red face. The nurse suspect it maybe an allergic reaction. Given allergy reaction medication. My index finger was connected to a screen monitor that my heart rate and saturation. I noticed my heart rate was fluatuating the lowest was 52 and the highest was 163 and the machine was beeping. But I was feeling calm, no pain in my chest. We were waiting in the room for the doctor to speak with a dermatologist. My heart rhytmn pattern was also a bit all over the place.
The outcome was no steroid because after the steroid worn out, the skin redness may rebound. Concurrently, steroid is no good for my body in the long term. I was prescribed with stronger hydrocrotison skin application cream and to take Antihistamines. If my skin is not getting better after this. I must go back to A&E.
03 Dec 2019
UCL A&E department – Rash is better But worried that the apaderm making her rash worse as she needs to moisturise. Amelia has been missing lots of days from school due to her Eczema. Care plan is antihistamine with dermatology ref use 50 50 as an alternative to epaderm.
Eastman Dental Hospital – Orthodontics – follow up visit at 11.30am.