Murrish Family
Chanel's Cause
Fundraising for CHUF
Story
Chanel’s Heart Journey
Diagnosis:
Hypoplastic Left Heart Syndrome with Intact Atrial Septum, Mitral Atresia / Aortic Atresia, Peg Fed, Left Vocal Cord Palsy, Hemiplegia Stroke, Cerebral Palsy, Epilepsy.
We found out at our routine 20 week scan our baby girl had a heart condition. Later confirmed at a ECHO (heart) scan at Newcastle RVI she had only half a heart, a rare CHD (congenital heart defect) called HLHS (Hypoplastic Left Heart Syndrome) and by 30 weeks pregnant it would turn out to be the rarest form of it.
We were told HLHS is the most fatal CHD in babys/children, it affects roughly 1 in 5000 newborns and more common in boys. That HLHS babys can usually have a natural delivery although the baby will need a drug at birth to keep the ducts open to allow the baby to survive until the first open heart surgery, usually at a few days old. HLHS babys need 3 open heart surgery’s The Norwood at a few days old, The Glenns between 4-6 months old and The Fontan between 3-5 years old. We were told the risks are high and less than 50% of children will make it to the age of 5 and even surviving all surgery’s life expectancy is only to adulthood as can never be fixed.
Even knowing all the above Chanel’s case was much more serious and she also had something called IAS (Intact atrial septum). We were told this would mean the drug when born or surgery’s would not work unless this could be opened first and would be fatal minutes after birth. IAS affects roughly only 6% of HLHS cases and there is only around 5 affected as Chanel in the world. Because of this they told us she needed to be born by caesarean in adjoining theatres for immediate surgery to open this. Her survival rate was considerably less than even a typical HLHS case and because of rarity would be one of the only caesareans performed at Newcastle Freemans as they have no maternity facilities. She would be born in a cardiac theatre and would be only one of the few babys ever to have surgery after birth. Also because of this complication we were told there is a larger chance she could have had or develop lung damage and maybe result in a lung condition named lymphangiectasia or inability to complete The Fontan was another possibility we were told, this could also mean heart transplantation would not be an option and a heart-lung transplantation may be required which carries low rates of long term life expectancy and may not be suitable in very small children.
When given all the news we were given three options. The first was termination of pregnancy. The second to go ahead with pregnancy and a natural labour and let her go away without intervention in our arms. The third was to proceed with pregnancy, a caesarean labour and all the above surgical procedures knowing the high fatality risks and even after caring for a child which will be of palliative care. Although we considered every option and think different options are right for different people we knew from the start we would be going with the third and no matter what the facts were want everyone to fight for her and do all they can, which we have every faith the team at Newcastle Freemans are the best to do this.
With my team around me and a huge team behind me in the corner of the theatre room ready to save our baby girl, the hole situation was surreal. I couldn’t believe it was all happening to us and it all felt more like a film you would watch on tv. Chanel was born at 9:44am on Monday 24th February 2014. When born they quickly lifted her up for me to get a glimpse of her. She was beautiful and so tiny. She looked so much like her brothers and all I wanted was to grab hold of her and never let her go. This wasn’t possible and with in seconds of this Chanel began to gasp for air, she turned a shade of blue and became very limp and lifeless in her arms. Not even having time to weigh her, her surgeon shouted ‘we havnt got time, go go go!’. The room became very quiet and very empty. Without ever been able to touch my baby, she was gone…
Chanel was took into the adjoining theatre for immediate open heart surgery. This was the quickest such major surgery had ever been done and Chanel become the youngest open heart surgery patient in the world. With me being on an operating table in a cardiac theatre and in a hospital with no maternity facilities they kept me in theatre and cardiac recovery longer than usual to make sure I was safe and so we were close by for me and her daddy to await news on our precious baby girl. 4 hours later and the wait to hear if she was alive and how her surgery was going was agonising. I begged my anaesthetist if she could go into Chanels theatre room and find out how things were going. She brought me back a photo. Our princess had made it! Her surgery had gone as well as it could. She was on a life support machine, stitched back up and we were told they were going to finish scanning her and then they would push her passed me in recovery on her way to intensive care so we could see her.
After I was took to stay on an adult cardiac ward and as I was still numb from the C-section, my husband comforted me then headed to picu as soon as he was allowed to be with Chanel. Chanel was ventilated, sedated and paralysed. She had wires coming from everywhere. As much as you try and prepare yourself to see your child critically ill, it is an impossibility. The next day I got to hold her for the first time to help bond through a jungle of wires and tubes. Chanel got to meet her two big brothers too but all we could do was sit by her side, hold her hand, talk to her and pray for improvement…
6 days later they weaned her sedation medication a little and she opened her eyes for the first time! Although no improvements came… Chanel could not breathe at all for herself and was stuck on life support! On day 6 we also had her christened and then signed consent forms with no other options left but to prepare her for her 2nd open heart surgery, The Norwood Procedure, for the very next day at only 7 days old. As Chanel was very sick and going into her Norwood already on a ventilator we were prepared for the worst and the very high possibility she would come back on ECMO (heart and lung life support).
Me and my husband pushed Chanel along the corridor from picu to the theatre doors she was born in and had her first open heart surgery just a week before. We kissed her head and told her how much we loved her and that we would see her soon… We cried, talked and walked the hospital grounds. Not wanting to be too far from our Princess, when over 7 hours later we finally got the call to say she was ok and her surgery had went well. Chanel did not come back on ECMO and surprised everyone! Although this was the most heartbreaking point for us to see our baby girl… Chanel was very sick still and on a lot more medication. She was ice cold to touch and her chest was left quite widely open. We could see her tiny heart beating in front of our eyes and little lungs underneath a pool of blood. Chanel had to be put in a private cubicle to reduce the risk of infection because of her chest been open and was 10 days before we could finally take her back to theatre again to close her up.
Learning to take each day at at time, appreciating every day with our new daughter. Taking small baby steps of improvement. Juggling hospital life and home life, me and husband spent our time one of us at home caring for our boys whilst the other sat by Chanels bed. Ensuring all our children had one parent at all times. We would swap evey couple of days and only seeing each other in passing for what turned out to be for over 3 month… But we adjusted and we were grateful!
Things were going steady but the night before Chanel was meant to move down from intensive care to high dependency at 3 weeks old, Chanel gave us a big scare! We were awoken at 2:00am with a heart rate of 240! She crashed, needed to be resuscitated and given shock plate treatment on her chest. She was placed back on life support and after this Chanel developed a rhythm problem and needed an external pace maker for quite a while. Although we did not find out she had a stroke until later with her being sedated and paralysed so much this is when we believe it happened… She then got off the ventilator and managed to make it to high dependency on a pacemaker after 5 weeks in picu.
As she was ventilated 3 times it damaged her vocal cords and she had a silent cry for 2 months. She also had to continue nil by mouth and although was nj, the ng, she is now peg fed. We had ups and downs and 8 trips to theatre during her first hospital stay but Chanel was finally discharged home for the very first time at 3 months old.
We had two weekly check ups and fabulous almost 3 month at home. Apart from two hospital stays, one for oxygen due to a cold and another for a heart catheter op to check her pressures. We had the most amazing family times and Chanel got to bond properly with her brothers…
Then on the 26th August 2014 the time came for her next stage and 3rd open heart surgery, The Glens.
Her surgery went well although her pulmonary arteries were narrow and needed some ballooning. She was ventilated for 3 days. Suffered low saturations and horrendous pain and headaches from the new circulation and pressure due to how narrow the pulmonary arteries were. It was so much harder to hand Chanel over and put her through more major surgery after having her home and her looking so well. Although Chanel took longer than usual to recover from her Glens she was discharged 3 weeks post surgery.
After her follow up clinic her consultant discharged us firstly for 4 months and then 6 months at a time! This was our biggest time away from hospital. We still had community nurse, dietician, speech and language, gastro team and physio to help with all her other needs but it was amazing to have such a gap from surgeries, living in hospital and heartache and to simply just live life with Chanel and her brothers. People often forget how hard it is on siblings too.
Medication throughout the day and night and constant tube feeding after so long just became our new normal and we now know no different. Chanel struggled and always will with her left side but at the age of 2 and a half years old with the help of a splint she learnt to walk and only a few weeks after taking her first steps incredibly showing her determination again, she walked in a charity event catwalk for the hospital that saved her life.
Life was amazing and no matter what challenges Chanel faces she is always happy. It was like she knows inside how blessed she is to be here so grabs every opportunity to live her life to the full.
After an incredible two year at home in the summer of 2016 Chanel started to get poorly again. By the new year she was very blue, unable to do more than a few steps and was very short of breath quick. She had a cardiac catheter close to her third birthday to find out if she was eligible for the next stage open heart surgery – the Fontan Procedure or if she would be listed for a heart transplant instead.
Although they thought her to be a very risky candidate for her next stage open heart and they also had no indication of what her recovery may be like as she was to be the first ever to have a Fontan surgery performed on a HLHS with IAS in the UK as she is the eldest to have ever lived with her condition in our country. They decided to take lots of precautions, scans, diets etc and go ahead with attempting a Fontan TCPC, a little more complex with a fenestration.
On the 17th August 2017 now purple and unable to even say a sentence due to being so breathless. With sats dropping into the 50s she went into theatre again for her Fontan TCPC. I cant even begin to express how hard this time was. This time it wasn’t a baby unaware of what was happening. It was a little girl who was sacred in a room full of people in masks staring at her, a bypass machine in the corner and a mask trying to cover her face. Terrified she went off to sleep screaming for her brothers and asking to go home. Unlike minor surgeries where you can take them home after, this was far from that which made it worse. We knew she was going to wake up even more scared and in pain in an intensive care unit, days or maybe weeks from now, unable to talk with a breathing tube down her throat. As much as you know you need to do it for her to live, the guilt as a parent eats at you like nothing iv felt and as I write this it actually never does leave you.
After sitting outside awaiting news for 6 hours all you think is, have they stopped her heart yet, is she off the bypass ok, have they completed her new circulation, are they closing her chest yet. Until you finally get the phonecall that she is on her way to picu. Quite obviously it broke our heart to see her like she was again but now so much older lying there, I kissed her and said sorry and just kept letting her know we were there and to get better so we could go back home. How much we love her and how amazing she is. The first 3 days tho were nothing as we hoped for and far from a smooth recovery. Chanels new circulation wasn’t working then as a result all of her other organs started to go into failure. She eventually ended up with 9 drains, the most many of the nurses had dealt with. She needed 5 days of dialysis and a very risky trip to cardiac cathether theatres to stretch open her fenestration. At one point we were told she could be looking at going on the transplant list and was in a very vulnerable position for this. Then it was decided to take her off the life support machine early to see if her breathing herself would help push the blood around her body. After the scariest 24 hours weening her ventilator as there were no more options if this didn’t work... she did it! But as she was awake earlier than they would of liked and as she was on dialysis and had so many drains in, having other organ problems, as well as just had another major open heart surgery - she was in horrendous pain and now could feel it all.
Chanel eventually got well enough to come home with the surgery being a great success but after only two weeks at home Chanel was rushed back in with a deep wound infection in her sternum. She had to have her chest left open with a vac dressing on to suck out the infection and go back to theatre every week, twice a week to do a deep clean inside her chest. Psychologically for Chanel this was actually an even worse stent in hospital than her open hearts. She begged to go home and screamed every few days terrified when she seen the bed coming for her for theatre and knew it was for her. She was hysterical having to keep getting put to sleep again and again. This time I really didn’t think I would get the same happy, content little girl back home with everything she had dealt with.
Eventually a year after her 4th open heart surgery (Fontan TCPC) im so lucky and thankful to say we have. She had her 23rd surgery a few month after to have her gaulbladder out but recovered quick and well. I cant find enough words to explain how amazing she is. She is pink, sats in the 90s, full of energy and she is happy!
As everything was perfect we got a shock when suddenly in the new year of 2019 we had to make our first 999 phonecall. I put Chanel to bed at 8:00pm on a Monday night, completely well and an ordinary time for her. At 9:00pm she came in my room. She tossed and turned around a lot not being able to get back off and then when I looked at her she was staring straight passed me, I grabbed her and said Chanel look at mammy and tried to lift her up but she was limp and completely lifeless. I called for her Dad and then she started shaking uncontrollably down her left side and her hand/arm was spasming in ways I have never seen her hand move before. This continued off and on for 2 and a half hours, we got her back in consciousness off and on for a few minutes inbetween every now and then. We had no idea what was happening and our first thought was it was another stroke then we had her sats monitor on and her heart rate went right up and her oxygen dropped to 60 and she turned blue and her feet went black. I was cradling her on my knee and honestly thought a cardiac arrest was coming next and I was going to loose her there and then, thinking thats how it was going to end and my words to her were going to be the last is so hard to admit because I always believe in thinking positive for positive things to happen but I really was the most scared I have ever been for her. Even tho she has been through so much more life threatening they have always been in a planned controlled environment and this was an emergency situation we were all alone and we had no idea at the time what it was that was happening.
I know how many people have negative things to say about the NHS but the staff themselves are incredible (and we more than most have a everything to thank them for), we were very out of our comfort zone at Sunderland Hospital with being regulars at the Freeman Hospital but we couldn’t have been more well looked after. Don’t get me wrong the Paramedics who were called out were amazing too but from calling 999 for an unresponsive child who has a known serve condition lying lifeless dribbling out of the side of her mouth and blue and to take 40 minutes to get an ambulance is absolutely ridiculous.
Thinking back to the week of Christmas just a few weeks earlier when Chanel was a little unwell, she had an episode where she went a little lifeless in my arms but it only lasted around 60 seconds but then she went to sleep after which is unusual for her and now I definitely think that it was a little seizure too. Because of there already being a history of brain damage there is a high possibility this is going to happen again and this being such a severe one lasting so many hours they have started her on a medication for seizures. They have started her on the lowest dose so if it happens again we can go up to find a level to try and control them.
With a new thing of epilepsy to Chanels list of things to look out for and now we are home and have had a little sleep we can see how it could have been so much worse and are back to positive thinking again! Chanel makes us so proud even in and out of consciousness lying on her side having a seizure she managed to say ‘when I feel better can me and you play princess’s’ she is unreal. So brave and strong she continues to absolutely blow us away.
In pregnancy she was first given a survival rate of 20% but by 30 weeks into pregnancy this dropped drastically to where we were refused any percentage as her chances of making it even passed birth were so slim. Since then she has made medical history in becoming the youngest open heart surgery patient in the world! The first ever HLHS/IAS Fontan in the UK hopefully paving the way for others like her. Fought through 23 trips to theatre, 4 of which the most major of open heart surgery’s, a major stroke, peg fed from birth and cerebral palsy but is doing unbelievably well and enjoys each and every moment.
Chanel's open heart surgeries are palliative and when she begins to deteriorate again there are no more surgeries to help so she will eventually next need a heart transplant. When a transplant will be needed we dont know and try not to think about.
Taking each day as it comes and enjoying life to its fullest. She is our miracle and smiles through everything. The biggest inspiration we have ever known and teaches everyone around her to always have faith!
There has been so much more highs lows, tears and smiles in between but I hope this helps explain the main points in her heart journey.
Chanel takes part in multiple charity fundraising each year, sells charity bracelets that she has got many celebs on board with, took part in multiple BHF adverts, raised money for and delivered gifts to children in hospital every Christmas Eve since she was born and to date raised over £10,000 between the British Heart Foundation and The Childrens Heart Unit Fund. She also spreads awareness of CHDs and the importance of Organ Donation through Social Media. For Courage she has been awarded multiple awards but for her Awareness and Fundraising for her age she became the youngest recipient of her local Durham Chairmans Medal aswell as the youngest ever person to have letters after her name Chanel Murrish BcYA was awarded a British Citizen Youth Award at Parliament.
If you have took the time to read this thank you!
Follow Chanel’s journey on:
Facebook - Chanel Murrish
Twitter - @ChanelMurrish
Instagram - @ChanelMurrish
Diagnosis:
Hypoplastic Left Heart Syndrome with Intact Atrial Septum, Mitral Atresia / Aortic Atresia, Peg Fed, Left Vocal Cord Palsy, Hemiplegia Stroke, Cerebral Palsy, Epilepsy.
We found out at our routine 20 week scan our baby girl had a heart condition. Later confirmed at a ECHO (heart) scan at Newcastle RVI she had only half a heart, a rare CHD (congenital heart defect) called HLHS (Hypoplastic Left Heart Syndrome) and by 30 weeks pregnant it would turn out to be the rarest form of it.
We were told HLHS is the most fatal CHD in babys/children, it affects roughly 1 in 5000 newborns and more common in boys. That HLHS babys can usually have a natural delivery although the baby will need a drug at birth to keep the ducts open to allow the baby to survive until the first open heart surgery, usually at a few days old. HLHS babys need 3 open heart surgery’s The Norwood at a few days old, The Glenns between 4-6 months old and The Fontan between 3-5 years old. We were told the risks are high and less than 50% of children will make it to the age of 5 and even surviving all surgery’s life expectancy is only to adulthood as can never be fixed.
Even knowing all the above Chanel’s case was much more serious and she also had something called IAS (Intact atrial septum). We were told this would mean the drug when born or surgery’s would not work unless this could be opened first and would be fatal minutes after birth. IAS affects roughly only 6% of HLHS cases and there is only around 5 affected as Chanel in the world. Because of this they told us she needed to be born by caesarean in adjoining theatres for immediate surgery to open this. Her survival rate was considerably less than even a typical HLHS case and because of rarity would be one of the only caesareans performed at Newcastle Freemans as they have no maternity facilities. She would be born in a cardiac theatre and would be only one of the few babys ever to have surgery after birth. Also because of this complication we were told there is a larger chance she could have had or develop lung damage and maybe result in a lung condition named lymphangiectasia or inability to complete The Fontan was another possibility we were told, this could also mean heart transplantation would not be an option and a heart-lung transplantation may be required which carries low rates of long term life expectancy and may not be suitable in very small children.
When given all the news we were given three options. The first was termination of pregnancy. The second to go ahead with pregnancy and a natural labour and let her go away without intervention in our arms. The third was to proceed with pregnancy, a caesarean labour and all the above surgical procedures knowing the high fatality risks and even after caring for a child which will be of palliative care. Although we considered every option and think different options are right for different people we knew from the start we would be going with the third and no matter what the facts were want everyone to fight for her and do all they can, which we have every faith the team at Newcastle Freemans are the best to do this.
With my team around me and a huge team behind me in the corner of the theatre room ready to save our baby girl, the hole situation was surreal. I couldn’t believe it was all happening to us and it all felt more like a film you would watch on tv. Chanel was born at 9:44am on Monday 24th February 2014. When born they quickly lifted her up for me to get a glimpse of her. She was beautiful and so tiny. She looked so much like her brothers and all I wanted was to grab hold of her and never let her go. This wasn’t possible and with in seconds of this Chanel began to gasp for air, she turned a shade of blue and became very limp and lifeless in her arms. Not even having time to weigh her, her surgeon shouted ‘we havnt got time, go go go!’. The room became very quiet and very empty. Without ever been able to touch my baby, she was gone…
Chanel was took into the adjoining theatre for immediate open heart surgery. This was the quickest such major surgery had ever been done and Chanel become the youngest open heart surgery patient in the world. With me being on an operating table in a cardiac theatre and in a hospital with no maternity facilities they kept me in theatre and cardiac recovery longer than usual to make sure I was safe and so we were close by for me and her daddy to await news on our precious baby girl. 4 hours later and the wait to hear if she was alive and how her surgery was going was agonising. I begged my anaesthetist if she could go into Chanels theatre room and find out how things were going. She brought me back a photo. Our princess had made it! Her surgery had gone as well as it could. She was on a life support machine, stitched back up and we were told they were going to finish scanning her and then they would push her passed me in recovery on her way to intensive care so we could see her.
After I was took to stay on an adult cardiac ward and as I was still numb from the C-section, my husband comforted me then headed to picu as soon as he was allowed to be with Chanel. Chanel was ventilated, sedated and paralysed. She had wires coming from everywhere. As much as you try and prepare yourself to see your child critically ill, it is an impossibility. The next day I got to hold her for the first time to help bond through a jungle of wires and tubes. Chanel got to meet her two big brothers too but all we could do was sit by her side, hold her hand, talk to her and pray for improvement…
6 days later they weaned her sedation medication a little and she opened her eyes for the first time! Although no improvements came… Chanel could not breathe at all for herself and was stuck on life support! On day 6 we also had her christened and then signed consent forms with no other options left but to prepare her for her 2nd open heart surgery, The Norwood Procedure, for the very next day at only 7 days old. As Chanel was very sick and going into her Norwood already on a ventilator we were prepared for the worst and the very high possibility she would come back on ECMO (heart and lung life support).
Me and my husband pushed Chanel along the corridor from picu to the theatre doors she was born in and had her first open heart surgery just a week before. We kissed her head and told her how much we loved her and that we would see her soon… We cried, talked and walked the hospital grounds. Not wanting to be too far from our Princess, when over 7 hours later we finally got the call to say she was ok and her surgery had went well. Chanel did not come back on ECMO and surprised everyone! Although this was the most heartbreaking point for us to see our baby girl… Chanel was very sick still and on a lot more medication. She was ice cold to touch and her chest was left quite widely open. We could see her tiny heart beating in front of our eyes and little lungs underneath a pool of blood. Chanel had to be put in a private cubicle to reduce the risk of infection because of her chest been open and was 10 days before we could finally take her back to theatre again to close her up.
Learning to take each day at at time, appreciating every day with our new daughter. Taking small baby steps of improvement. Juggling hospital life and home life, me and husband spent our time one of us at home caring for our boys whilst the other sat by Chanels bed. Ensuring all our children had one parent at all times. We would swap evey couple of days and only seeing each other in passing for what turned out to be for over 3 month… But we adjusted and we were grateful!
Things were going steady but the night before Chanel was meant to move down from intensive care to high dependency at 3 weeks old, Chanel gave us a big scare! We were awoken at 2:00am with a heart rate of 240! She crashed, needed to be resuscitated and given shock plate treatment on her chest. She was placed back on life support and after this Chanel developed a rhythm problem and needed an external pace maker for quite a while. Although we did not find out she had a stroke until later with her being sedated and paralysed so much this is when we believe it happened… She then got off the ventilator and managed to make it to high dependency on a pacemaker after 5 weeks in picu.
As she was ventilated 3 times it damaged her vocal cords and she had a silent cry for 2 months. She also had to continue nil by mouth and although was nj, the ng, she is now peg fed. We had ups and downs and 8 trips to theatre during her first hospital stay but Chanel was finally discharged home for the very first time at 3 months old.
We had two weekly check ups and fabulous almost 3 month at home. Apart from two hospital stays, one for oxygen due to a cold and another for a heart catheter op to check her pressures. We had the most amazing family times and Chanel got to bond properly with her brothers…
Then on the 26th August 2014 the time came for her next stage and 3rd open heart surgery, The Glens.
Her surgery went well although her pulmonary arteries were narrow and needed some ballooning. She was ventilated for 3 days. Suffered low saturations and horrendous pain and headaches from the new circulation and pressure due to how narrow the pulmonary arteries were. It was so much harder to hand Chanel over and put her through more major surgery after having her home and her looking so well. Although Chanel took longer than usual to recover from her Glens she was discharged 3 weeks post surgery.
After her follow up clinic her consultant discharged us firstly for 4 months and then 6 months at a time! This was our biggest time away from hospital. We still had community nurse, dietician, speech and language, gastro team and physio to help with all her other needs but it was amazing to have such a gap from surgeries, living in hospital and heartache and to simply just live life with Chanel and her brothers. People often forget how hard it is on siblings too.
Medication throughout the day and night and constant tube feeding after so long just became our new normal and we now know no different. Chanel struggled and always will with her left side but at the age of 2 and a half years old with the help of a splint she learnt to walk and only a few weeks after taking her first steps incredibly showing her determination again, she walked in a charity event catwalk for the hospital that saved her life.
Life was amazing and no matter what challenges Chanel faces she is always happy. It was like she knows inside how blessed she is to be here so grabs every opportunity to live her life to the full.
After an incredible two year at home in the summer of 2016 Chanel started to get poorly again. By the new year she was very blue, unable to do more than a few steps and was very short of breath quick. She had a cardiac catheter close to her third birthday to find out if she was eligible for the next stage open heart surgery – the Fontan Procedure or if she would be listed for a heart transplant instead.
Although they thought her to be a very risky candidate for her next stage open heart and they also had no indication of what her recovery may be like as she was to be the first ever to have a Fontan surgery performed on a HLHS with IAS in the UK as she is the eldest to have ever lived with her condition in our country. They decided to take lots of precautions, scans, diets etc and go ahead with attempting a Fontan TCPC, a little more complex with a fenestration.
On the 17th August 2017 now purple and unable to even say a sentence due to being so breathless. With sats dropping into the 50s she went into theatre again for her Fontan TCPC. I cant even begin to express how hard this time was. This time it wasn’t a baby unaware of what was happening. It was a little girl who was sacred in a room full of people in masks staring at her, a bypass machine in the corner and a mask trying to cover her face. Terrified she went off to sleep screaming for her brothers and asking to go home. Unlike minor surgeries where you can take them home after, this was far from that which made it worse. We knew she was going to wake up even more scared and in pain in an intensive care unit, days or maybe weeks from now, unable to talk with a breathing tube down her throat. As much as you know you need to do it for her to live, the guilt as a parent eats at you like nothing iv felt and as I write this it actually never does leave you.
After sitting outside awaiting news for 6 hours all you think is, have they stopped her heart yet, is she off the bypass ok, have they completed her new circulation, are they closing her chest yet. Until you finally get the phonecall that she is on her way to picu. Quite obviously it broke our heart to see her like she was again but now so much older lying there, I kissed her and said sorry and just kept letting her know we were there and to get better so we could go back home. How much we love her and how amazing she is. The first 3 days tho were nothing as we hoped for and far from a smooth recovery. Chanels new circulation wasn’t working then as a result all of her other organs started to go into failure. She eventually ended up with 9 drains, the most many of the nurses had dealt with. She needed 5 days of dialysis and a very risky trip to cardiac cathether theatres to stretch open her fenestration. At one point we were told she could be looking at going on the transplant list and was in a very vulnerable position for this. Then it was decided to take her off the life support machine early to see if her breathing herself would help push the blood around her body. After the scariest 24 hours weening her ventilator as there were no more options if this didn’t work... she did it! But as she was awake earlier than they would of liked and as she was on dialysis and had so many drains in, having other organ problems, as well as just had another major open heart surgery - she was in horrendous pain and now could feel it all.
Chanel eventually got well enough to come home with the surgery being a great success but after only two weeks at home Chanel was rushed back in with a deep wound infection in her sternum. She had to have her chest left open with a vac dressing on to suck out the infection and go back to theatre every week, twice a week to do a deep clean inside her chest. Psychologically for Chanel this was actually an even worse stent in hospital than her open hearts. She begged to go home and screamed every few days terrified when she seen the bed coming for her for theatre and knew it was for her. She was hysterical having to keep getting put to sleep again and again. This time I really didn’t think I would get the same happy, content little girl back home with everything she had dealt with.
Eventually a year after her 4th open heart surgery (Fontan TCPC) im so lucky and thankful to say we have. She had her 23rd surgery a few month after to have her gaulbladder out but recovered quick and well. I cant find enough words to explain how amazing she is. She is pink, sats in the 90s, full of energy and she is happy!
As everything was perfect we got a shock when suddenly in the new year of 2019 we had to make our first 999 phonecall. I put Chanel to bed at 8:00pm on a Monday night, completely well and an ordinary time for her. At 9:00pm she came in my room. She tossed and turned around a lot not being able to get back off and then when I looked at her she was staring straight passed me, I grabbed her and said Chanel look at mammy and tried to lift her up but she was limp and completely lifeless. I called for her Dad and then she started shaking uncontrollably down her left side and her hand/arm was spasming in ways I have never seen her hand move before. This continued off and on for 2 and a half hours, we got her back in consciousness off and on for a few minutes inbetween every now and then. We had no idea what was happening and our first thought was it was another stroke then we had her sats monitor on and her heart rate went right up and her oxygen dropped to 60 and she turned blue and her feet went black. I was cradling her on my knee and honestly thought a cardiac arrest was coming next and I was going to loose her there and then, thinking thats how it was going to end and my words to her were going to be the last is so hard to admit because I always believe in thinking positive for positive things to happen but I really was the most scared I have ever been for her. Even tho she has been through so much more life threatening they have always been in a planned controlled environment and this was an emergency situation we were all alone and we had no idea at the time what it was that was happening.
I know how many people have negative things to say about the NHS but the staff themselves are incredible (and we more than most have a everything to thank them for), we were very out of our comfort zone at Sunderland Hospital with being regulars at the Freeman Hospital but we couldn’t have been more well looked after. Don’t get me wrong the Paramedics who were called out were amazing too but from calling 999 for an unresponsive child who has a known serve condition lying lifeless dribbling out of the side of her mouth and blue and to take 40 minutes to get an ambulance is absolutely ridiculous.
Thinking back to the week of Christmas just a few weeks earlier when Chanel was a little unwell, she had an episode where she went a little lifeless in my arms but it only lasted around 60 seconds but then she went to sleep after which is unusual for her and now I definitely think that it was a little seizure too. Because of there already being a history of brain damage there is a high possibility this is going to happen again and this being such a severe one lasting so many hours they have started her on a medication for seizures. They have started her on the lowest dose so if it happens again we can go up to find a level to try and control them.
With a new thing of epilepsy to Chanels list of things to look out for and now we are home and have had a little sleep we can see how it could have been so much worse and are back to positive thinking again! Chanel makes us so proud even in and out of consciousness lying on her side having a seizure she managed to say ‘when I feel better can me and you play princess’s’ she is unreal. So brave and strong she continues to absolutely blow us away.
In pregnancy she was first given a survival rate of 20% but by 30 weeks into pregnancy this dropped drastically to where we were refused any percentage as her chances of making it even passed birth were so slim. Since then she has made medical history in becoming the youngest open heart surgery patient in the world! The first ever HLHS/IAS Fontan in the UK hopefully paving the way for others like her. Fought through 23 trips to theatre, 4 of which the most major of open heart surgery’s, a major stroke, peg fed from birth and cerebral palsy but is doing unbelievably well and enjoys each and every moment.
Chanel's open heart surgeries are palliative and when she begins to deteriorate again there are no more surgeries to help so she will eventually next need a heart transplant. When a transplant will be needed we dont know and try not to think about.
Taking each day as it comes and enjoying life to its fullest. She is our miracle and smiles through everything. The biggest inspiration we have ever known and teaches everyone around her to always have faith!
There has been so much more highs lows, tears and smiles in between but I hope this helps explain the main points in her heart journey.
Chanel takes part in multiple charity fundraising each year, sells charity bracelets that she has got many celebs on board with, took part in multiple BHF adverts, raised money for and delivered gifts to children in hospital every Christmas Eve since she was born and to date raised over £10,000 between the British Heart Foundation and The Childrens Heart Unit Fund. She also spreads awareness of CHDs and the importance of Organ Donation through Social Media. For Courage she has been awarded multiple awards but for her Awareness and Fundraising for her age she became the youngest recipient of her local Durham Chairmans Medal aswell as the youngest ever person to have letters after her name Chanel Murrish BcYA was awarded a British Citizen Youth Award at Parliament.
If you have took the time to read this thank you!
Follow Chanel’s journey on:
Facebook - Chanel Murrish
Twitter - @ChanelMurrish
Instagram - @ChanelMurrish