Chanel's Story

Diagnosis:
Hypoplastic Left Heart Syndrome with Intact Atrial Septum
Mitral Atresia / Aortic Atresia
Left Vocal Cord Palsy
Sroke
Nasal Gastric Fed

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.

Chanel was born at 9:44am on Monday 24th February 2014. When born they cut her cord she turned blue and her cry turned to a gasp. Not even having time to weigh her or us managing nothing more than a glimpse of her she was gone and immediately rushed into open heart surgery in the adjoining theatre room. Her surgery went well although she could not get off the ventilator so her Norwood procedure scheduled for 4 weeks old had to be moved to just 7 days. As she went into the Norwood on a ventilator and with been born with the added complication of an intact septum we were told by a lot of people to expect her to come back on an ecmo (heart & lung life support) machine which she did not and surprised everyone.

Because of the swelling from her Norwood, her chest had to remain open for 10 days. Her tiny heart beating in front of our face with only a gorse covering it before it could be finally closed back up. At 3 weeks old in intensive care Chanel gave us a big scare, we were awoken at 2:00am with a heart rate of 240! She needed to be resuscitated and given shock plate treatment on her chest. 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 continued to progress well but slowly, she was ventilated 3 times and as a result it damaged her vocal cords and she had a silent cry for 2 months. She had to continue nil by mouth and although was nj, she is now ng fed.

Chanel was finally discharged home for the first time at 3 months old. After two weekly check ups and fabulous almost 3 month at home, on the 26th August 2014 she went in for her next stage 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.

Chanel was discharged 3 weeks post glens surgery and this is were we are now. After her follow up clinic her consultant has discharged us for 4 months! This is our biggest time away from hospital. We still have community nurse, dietician, speech and language, gastro team and physio to help with all her other needs but all in all she is doing amazing!

In pregnancy she was first given a survival rate of 20% but by 30 weeks into pregnancy this dropped drastically to were 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! Fought through 10 trips to theatre, 3 of which the most major of open heart surgerys but is doing unbelievably well.

Chanel will need more heart surgerys in the need future and is due her next stage open heart between 3-5 years old and one day will eventually need a heart transplant. When her transplant will be needed we dont know and try not to think about. Taking each day as it comes and enjoying it 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!

Thanks for reading! <3

Like and follow Chanel's journey on facebook https://www.facebook.com/ChanelMurrishHLHS

Our 2014 CHUF Fundraising Efforts:

Fay & Micheal are raising money for CHUF (Childrens Heart Unit Fund). CHUF'S aim is to raise money to buy equipment, facilities, aftercare and research for the Children's Heart Unit and the Paediatric Intensive Care Unit at the Freeman Hospital in Newcastle.

Fay has organised a charity night (Chanel's Heart Charity Night) to be held at Martinos Seaham on the 14/02/2014 with disco, live band, raffle and more. It will be 10 days before Chanel is born. https://www.facebook.com/events/510115195762551/

Chanel's 4 year old brother Chase is running the 1.5k CHUF Heart And Soul race on the 15th June 2014 at Paddy Freemans Park...

Micheal is running in the Bupa Great North Run 2014 for CHUF in September 2014 covering 13.1 miles from Newcastle across the Tyne Bridge and onto a costal finish in South Shields...

Chanel and brothers Chase and Cole will take part in the CHUF Toddle at Close House...

Thank you form the heart for reading our story and any donation is greatly appreciated xxx