At this difficult time help Sian & John

Asher's story;

Asher Our Miracle Heart Warrior

Asher was born with a very rare heart condition called Truncus Arteriosus which wasn’t picked up on scans.

On the 19th of April, Asher (11 weeks old) was taken to A&E as his lips were blue and he was breathing fast. At Arrowpark he became very poorly, very quickly. They saved his life!

When they had stabilised him, he was quickly transferred by ambulance to Alder Hey Hospital.

We were told they didn’t know if Asher would make it 12 hours.

To make matters worse he also had Covid, but needed emergency surgery to limit the blood flow going to his lungs. He underwent the first part of surgery but it didn’t have the outcome the medical staff were hoping for. Asher needed the main surgery to fix his heart although they thought he was too weak to have it at this point.

After months on the ventilator, blood transfusions, sedations, drugs and 24/7 care in the intensive care unit. A second opinion from the Heart specialist hospital in Newcastle was needed to see what to do next As Asher was deteriorating.

They did the main surgery in June, with a high risk that Asher would not make it through the surgery or then through the first few days and weeks of recovery. Over 12 hours later in the theatre … He pulled through! The longest day of our lives.

He came off ECMO the bypass machine, then pacemaker, then fluid balance. Then thank God for the ventilator. He started to breathe on his own for the first time in 14 weeks.

He started putting weight on and weaned off sedations and medicines. He pulled through it all!!

After 100 days to the day!! 2 major heart surgeries, ventilator, ECMO heart bypass, oxygen, sedations, medications, wobbles, SCARES!! Sleepless nights, living at Alder Hey, Ronald Macdonald. We were told we could take him home!

We had 2 lovely weeks at home in our little bubble then Asher started to have these episodes where he would go blue/struggle to breathe then would go limp! We called the ambulance out a few times and had a few scary trips to Arrowe Park.

We spoke to Asher's cardiac team at Alder Hey and they admitted him straight away, he had a virus. Which was made worse by his complex history and low immune system.

We got discharged from Alder hey Friday 25th August. Then on Monday 28th August. Another scare and as John went to do CPR the ambulance came.

Back at Alder Hey where Asher is well known.. they carried out a Bronchoscopy on 30/8/23 where they discovered he had scar tissue/trachea damage from the ET breathing tube and Covid. He had a procedure which took his 3mm trachea to a 5mm. (Should be 6mm).

Asher was then back on the ventilator to give his lungs a rest...

Unfortunately, the procedure for Asher's trachea was not successful.

Asher’s trachea had retracted back to 3mm.

He wasn’t expecting that to happen so soon!!

He stretched it again to 7mm in an emergency on Friday 1/9/23 as Asher was struggling to breathe and said he wouldn’t ‘last’ over the weekend if he didn’t try!

Unfortunately… Asher was still struggling to breathe so they transferred Asher by helicopter on Sunday 3rd September to GOSH for more procedures and possibly surgery.

Thank God he had a bed and they have a room for us whilst he’s in ICU.

They did the first procedure on Monday 4th September.. and checked him the week later. They were happy that the procedure had been successful.

On Tuesday 12th September we came back from GOSH London to Alder Hey via ambulance through the night for recovery. Unfortunately, Asher had ANOTHER blue episode.. on Saturday 16th September even with the repaired tracea. He was moved back to the ICU on the ventilator, sedation etc.

Monday 18th September he had an episode on the ventilator??!!! Think due to him weaning off drugs/stress?

Because Asher had poor access to veins and arteries due to a life in ICU and ECMO they decided they needed to put a broviac tunnel central line in through his liver. For access if needed.

On the 4th of October, we got discharged from Alder Hey. 11th October GOSH collected us via Ambulance for Ashers RV look down throat and were more than happy to discharge us. Friday 13th October they took us home then on Monday 16th October ambulance had more scares when we had to call for another ambulance to our home, and we were taken into Arrowe Park. He had sepsis! In his broviac tunnel line. Nearly killed him but then it also saved his life as it was access to medicine etc.

After another very scary time in Arrowe Park when they didn’t know if Asher would make it. The Newts team managed to stabilise him and blue-lighted to Alder Hey.

On this admission, he had lost the ability to move his left side. Even his smile. They did an MRI Brain scan. The neurologist told us the worst news we could hear after everything Asher’s already had thrown at him.. he now has had a stroke and has severe brain damage.. could mean cerebral palsy, seizures/epilepsy in future and we would just have to wait and see how Asher develops.

We have always joked about moving closer to Alder Hey.. but we thought it through and after bad experiences and Arrowe Park saying Ashers was too complex for them.. we decided the move was needed. Necessary.

We got discharged from Alder Hey on 26th November and moved into our new home trying to create nice new memories especially being home for Christmas. We got home for 5 precious weeks then NYE Asher was struggling to breathe.. we drove 3 minutes to Alder Hey A&E and were admitted for 3 nights where he had 3 viruses.

We had a week back home including getting home for John's birthday. Then on Tuesday 9th January Asher started being sick. We took him back to Alder Hey then his sick became dark green. He was nil by mouth for 10 days all tests were carried out including the ultrasound scan which finally answered. He had scar tissue from his abdomen surgery in June. His small bowel was narrowed so they needed to cut the narrow part out and remove scar tissue. Praying for no more scar tissue to form?!

Asher seemed to of coped well with surgery however Asher being Asher we were back to HDU on oxygen after a few too many scary turns where he would scream in pain and then couldn’t catch his breath.

Currently, we’re still in critical care, HDU.

Thank you to everyone who has supported us through this horrible never-ending situation. We are truly grateful and so blessed to have you and the NHS. I honestly don’t know how we would have come this far without the love, help and support from our Church families, friends and God

We have had lots of messages from people looking to help us out in any way.

I guess helping us financially would be the best way as due to completely unexpected circumstances we’re here in the hospital with our boy full time.

My maternity leave ended in September! and with no idea what the future holds I have had no choice but to be Asher’s full time carer aswell as Mummy, and John has had no choice but to go on sick leave, as you can imagine dealing with our current situation, he finds it mentally challenging to work and concentrate on Asher's health.

If you feel inclined to help us during these unforeseen circumstances, your support would be greatly appreciated.

Please visit our GoFundMe page for more details.

Thank you for your generosity and ongoing support. It means everything to us.

Love Asher’s Mummy x