About - Chanel M

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.