Chanel’s brother has severe nut allergies, please do not send any products containing nuts to this family

Story Written 2018

Chanel was diagnosed antenatally with a rare congenital heart defect know as Hypoplastic Left Heart Syndrome with an Intact Atrial Septum – basically half a heart. She has required four open heart surgeries, the first being immediately at birth (The Worlds Youngest Ever Open Heart Surgery Patient), making medical history and paving the way for others born like her. Her most recent was August 2017 when she was 3 and half years old and was also the hardest physically and mentally for Chanel (The first Fontan on a HLHS/IAS in the UK).

Chanel has and continues to go through a lot in her life – she has been tube fed since birth, had a major stroke at 2 weeks old resulting in weakness to her whole left side and cerebral palsy (but learnt to walk at 2 and half years old with the help of a leg splint), had 24 operations and procedures in total, including 4 major open heart surgeries, but is the happiest, kindest, most beautiful little girl ever, always thinking of others. She is utterly inspiring and teaches everyone around her to always have hope. When Chanel deteriorates again she will need a heart transplant, but we take each day as it comes and have every faith that Chanel will deal with anything that may come her way with the same fight and determination she always has.

Chanel loves all things Disney, especially Mickey and Minnie Mouse and Princesses. She truly believes she is a real Disney Princess just like any little girl should. He favourite is Rapunzel. Chanel also loves Peppa Pig, taking photos, and board games with her two brothers.

Update 2nd December 2019

Chanel has struggled since the beginning of winter, with lots of bugs going around and she takes longer to get better than most but we have thankfully avoided hospital. She had her cardiac review and got another few months ok! She is so excited for Christmas now.

Update 1st September 2019

As of a few days ago and after being tube fed 5 1/2 years (since birth) she is now feeding tube free.

Update 21st August 2019

Apart from her new diagnosis of Epilepsy in January there has been no change health- wise, she has her 6 month check up October/November time.

Update 23rd November 2023

Chanel has rejoined Post Pals. People who have closely followed Chanel’s journey may have noticed we haven’t posted as much the last two years… it’s been a little crazy to say the least.

Chanel had her first epileptic seizure when she was 5. More than likely caused from the brain damage from her stroke she had as a baby in PICU which caused her cerebral palsy to her left side also. We were never made aware that this could possibly be a result especially years after so when it happened, her first seizure went on for 4 hours but at the time we had no idea what was happening or that it was in fact a seizure. 

After that first one, she was put on an epilepsy medication, Keppra and she was then seizure free for two years. In August 2021 she had another so we upped her medication but a few months later she had another one on Christmas Eve and we upped her medication to her max allowed dose of Keppra. In early January of 2022 she was put on a new epilepsy medication alongside it, Lamotrigine.

She soon after had another seizure and they kept coming every 2-3 weeks throughout the whole of last year and this. With each one they seemed to get more intense and more aggressive. She would have focals throughout the day where we lost her for a little while but didn’t seem as worrying as the ones she would have in her sleep. Every couple of weeks she would have one where her whole body stiffened, jerked and then would stop breathing on us. The stopping breathing and hike to her heart with her already severe heart condition. We had hospital trips, many of an ambulance, running for defibrillators in the middle of the night. It’s hard to admit but during some of them, especially when she wouldn’t start breathing again you fear the worst in that moment.

From starting Lamotrigine I didn’t like it. Every time we upped her dose, Chanel would become more like a zombie. Some periods of time upping the dose she would sit staring and slavering for two days or more, I had to feed her, carry her and would beg her to talk to me. They completely zoned her out. Then she would get somewhat adjusted by the dose, have another seizure and we would be asked to up again and did the whole circle time after again.

I also noticed some change with her breathing in her sleep and heart rate, which I felt started in the January of last year too. The same time we started this epilepsy medication. We had multiple 24 hour ECGs and a sleep apnea test done because of it.

A few times, I asked to stop the medication as my gut told me it wasn’t right and as well as dulling her personality I also thought it was causing the heart issues and possibly even triggering the seizures. I was told that the professionals wanted to get to the max does of the medication to see first as what if the seizures would have came themselves anyway. I seen their points of view so I am in no way saying anything about those involved with the decisions.

Anyway, fast forward to June this year. Chanel reached her max dose of Lamotrigine and in June, instead of the seizures being weeks apart, she had one every night in a row for 5 nights. Enough was enough and I asked and finally weaned her off Lamotrigine.

Since then, and off that awful medication, Chanel is this week over 4 month’s seizure free! I’m not saying she wont have more but this is the longest amount of time in two years. I also knew the medication was fulling her little personality but I didn’t realise until she is now completely off it, just how much. As well as being so scary, she has missed out on so much of life these last couple of years because of this medication. On top, her breathing and heart rate issues have stopped too.

I know many professionals will disagree with me that it was the cause but I know 100% that it has been and will forever feel guilt for not trusting my instincts sooner. But in saying that, always still listen to the advice of professionals, as I did see their points of view with continuing. 

She is now fully alert, thriving at school as she has a lot to catch up on and is one very excited little girl for Christmas this year. Crossing everything as I type this that she remains seizure free.

Story Written 2015

Emily was born with half a heart (Hypoplastic Left Heart Syndrome) and had three open heart surgeries before she was 3; this led to anxiety and difficulty sleeping. She also developed small motor tic disorder causing her to grimace and click her fingers.

Emily is incredibly brave and faces life head-on. She is also funny and self-deprecating but is often isolated as she cannot live life as other teens do.

In addition to HLHS, Emily has short stature and is around the size of a 9 year old.

Over the past 10 years, Emily has developed a serious leak on her heart valve which has been closely monitored during her many hospital visits. This past year, the leak has become critical and she has been hospitalised to have her heart restarted three times. She is now in heart failure and will have open heart surgery on December 5th: she is expected to be in hospital for 8 weeks or more. At present HLHS does not have a cure.

Update 13th May 2017

Hello everyone, these past few weeks have been quite rocky for Emily. At the end of April she collapsed at school, she was very lucky where she collapsed and only came out of it with some big bruises down her right leg, as well as on her hand. From there, the ambulance was called and she was taken to her local hospital for further tests, everything was done, as a lot of the doctors were worried it could be because of her heart.

In the end she had a pacemaker check and the results showed us that the pacemaker wasn’t firing properly, so this would cause her severe dizziness and in the end her collapsing. She stayed the night at the local hospital and was then transferred to Evelina the next day, after further tests the doctors at Evelina then decided to keep her at the hospital and operate on her as soon as the next slot was available.

The operation ran smoothly and the doctors are keeping their fingers crossed that this time everything will go as planned and hoped for. Emily spent 4 days at the hospital after surgery and then came home for just over 2 weeks, she is now going back to school as a boarder.

Although the recovery was quick, we are still unsure what the future holds for Emily, but we do our best to push the worry away and focus on everything else. Emily has her Mock GCSE’s in 3 weeks, which she is worried about as Emily has spent a fair amount of time away from school,but she is working hard and hoping to come out of them with high B’s and A’s.

We would all like to thank everyone who has continued to support our family through the hardships we face, you really do make Emily smile and she is very excited for the Post Pal party in July, fingers crossed that Emily will be well for it.

Update 26th April 2017

Emily was transferred to Evalina Children’s hospital yesterday and is currently awaiting open heart surgery. This will be the third in 18 months. Thank you to everyone who supports Em through the hard times. If you do want to send her post, please send it to Emily R, Savannah ward (cardiac), Evalina Children’s hospital, London

Update 2nd March 2017

Hi all, This month Emily has had a good month, she started the month with her appointment which went well and we are expecting another appointment in April sometime. Emily has had really good blood results this month and recently she has only had to test once every few weeks, which is so much better than every week for obvious reasons. So health wise she is as stable as she can be really.

Besides from Emily’s health she is very happy as she has been given the all clear to go on a trip to Lourdes in France that she tries to go on every year. She is going with a disability trust and is very very excited. Because she has been really quite well she has started to help other pals more by sending cards, letters and gifts out more regularly to different pals. She is also hoping to climb the O2 arena in May for charity. So more about that when we have the all clear to do so.

Emily would like to thank each and everyone of you. She has received some amazing post this month, we would like to thank Bev for the great hot chocolate she recently received, she really likes it and thinks that once she has run out of it she will by the same one again. Lyn, for all of the cute crafting bits you send to Emily and also she really like keeping in touch with you every few weeks.

They are just the tip of the iceberg, thank you really everyone ❤️

Update 30th December 2016

Emily has been fairly well for the last couple of months. She had a pacemaker appointment early December, before Christmas at London. Unfortunately, we had the news nobody expected or wanted – Emily’s pacemaker has started to fail, just as it did last time, but more rapidly. We have another appointment at the end of January,firstly to see if there has been any change (good or bad) and secondly start to form a plan. Currently the pacemaker’s life has got 2 years max, but as we know from last time 2 years can turn into 7 months very quickly, depending on the threshold of Emily’s pacemaker. It seems that this time there is nothing wrong with the lead, but in fact something wrong with Emily’s heart, making things more difficult as we move on.
Emily is a worrier and is worried about what is happening ,but also she is worried about the work she is missing at school. She is now in her initial GCSE year (10), so her work is more important than it used to be.
We would like to say a massive thank you to everyone who has sent post to Emily recently. Emily does try to send replies to everyone who has an address as often as possible. She has been given some amazing things and she said some of her “collections” are growing!!
Emily, Paul and I wish everyone a great start to 2017 xx

Update 23rd October 2016

Em had a chest drain late last night and it’s drained loads of blood from her lung tissue and chest cavity. She was sedated and on a ventilator all night, but is now coming around and breathing by herself, this is really great progress.

Update 23rd October 2016

Em suffered a major internal bleed that led to a sudden and extremely scary rush to intensive care. She turned white, non responsive, her left lung filled up and then collapsed as her chest flooded. Emergency care gave fluids and 3 bags of blood. She is now sedated in ICU as they run tests and drain the fluids off. Her cardiac registrar said it was ‘very hairy’ for a while.

Update 23rd October 2016

Emily was admitted for emergency surgery after problems with her pace maker. They had to open her chest to replace it and she has since had a collapsed lung. She is awake and in a lot of pain.

Update 9th July 2016

Lots of trips back and forwards to Evelina Children’s Hospital this month. Emily’s pacemaker will have to be replaced within the next eight months, so this is causing her a lot of worry.

She was due to go on her first senior school trip to Naples later in the year, but sadly she has been refused a ‘fit to fly’ from her doctors, so is terribly disappointed.

Over the moon that the school year has come to an end though and brought home another brilliant school report. Total superstar!

Update 2nd June 2016

Not great news this month. Emily has had to go down to Evelina a few times as her heart rate has dropped. Her pacemaker is not working at all well  as previously thought, will only be viable for up to eleven months. At the moment Emily’s specialists are deciding what they should do. This is going to take a while as Em has a unique set up with having only half a heart.

It’s a very worrying time for us all, as we wait to see if there is a possibility that she doesn’t have to have another major heart surgery this year. This is looking increasingly unlikely.

Emily is as always, her usual happy self. Trying to get on with her school work as she begins her GCSE years.

Update 6th May 2016

Emily has had a few minor problems this month. She had started to feel dizzy so we had to go into Evelina children’s hospital for some tests. The doctors have altered her drugs slightly in the hope this clears up, but this has led to her Warfarin levels dropping below the right level.

Her heart rate has slightly improved, but still couldn’t function without her pacemaker.

She is in her usual good spirits and is very grateful to everyone who takes the time to think of her.

Update 3rd April 2016

Not great news for Emily again this month. Her pacemaker is not working properly and will need to be replaced, which means another open chest surgery and time in hospital. It’s especially bad news for Em as her scar had healed well and we felt the worst was behind us.

Thank you to everyone who has thought about Emily this month. She is not able to write back to thank everyone, as she is back in school full time. She is trying to catch up with the work she missed while she was absent, and be ready to start her GCSEs in the new term.

Update 4th March 2016

Emily has had quite a good month this month. Thank you again to everyone who thinks of her. Bloods are still needing to be tested weekly, but INR levels are starting to even out and her scar is healing. She’s felt a little bit down recently as her school are strictly limiting the activities she takes part in, and she likes to try to live life as much as she can.
She’s recently taken up baking and really enjoys thinking up new recipes.

Update 5th February 2016

Emily was rushed back to hospital at the beginning of the month when her newly fitted pacemaker was having problems. After a few days at Evalina she came back home.

Now on Warfarin, she is having weekly blood test as we try to get her levels to stabilise. These are always painful because her veins often collapse.

Emily has received some lovely cards and gifts this month. Thank you so much to everyone who takes the time to think of her. It makes such a huge impact on her life.

Update 21st January 2016

Emily was rushed by ambulance back into Evelina and spent the second week of January back in hospital. Her pacemaker had been set at the wrong level and her heartbeat had dropped to 40 beats per minute. She was struggling for breath, but we assumed it was part of the recovery process, until she started to turn grey. Who knew a pacemaker could be set at the wrong level?!

Emily’s also struggled with her Warfarin levels, and is having to go to our local hospital every few days to have bloods taken. This is always traumatic, as most of her veins have collapsed.

At home until March, the post she receives is a real brightener. She’s been using the scrap booking gifts to make cards for other Pals, and also sent her own gift box to another Pal last week.

She is, as always, upbeat and has started to have schoolwork sent through, so she doesn’t get too far behind.

Thank you to everyone who thinks about Emily. Post Pals has been the best therapy!!

Update 31st December 2015

Unfortunately Emily’s operation to repair her heart valve was not possible. The surgeons fitted a new valve and a pacemaker. She will need to take Warfarin and at some point will require more open heart surgery.

She has left hospital and is now at home recovering for the next six to eight weeks, before returning to school.

We’d like to thank everyone at Post Pals and all the senders for making Emily’s time in hospital so much easier. The response was unbelievable. We think she received over 100 cards and letters and lots of parcels too.