Thanks for taking the time to visit my JustGiving page.

Welcome to Peter’s Just Giving page for Alder Hey Cardiac ICU. Peter is raising money to go directly to the Intensive Care Unit that specialises in Heart Conditions at Alder Hey. We hope that even a little amount can help towards children’s heart care in the unit.

Peter was admitted to Alder Hey on the 19th of June 2023 at only 6 weeks 6 days old, after a few hours stay in Preston hospital as we’d gone in for lack of feeding. While in Preston a health care assistant noticed Pete’s heart was beating far too fast, (260bpm a baby heart should be 120-160). Once it was noticed the ward was closed and the specialists in Preston were calling Alder Hey for advice. I watched them shave what little hair he had off, dunk him in ice (to try and shock the heart), run tests, try to take blood and also restrain him to prevent movement. By 16.40 on the 19th of June his heart function was failing and his blood was not circulating. Peter was blue lighted by the North West & North Wales Paediatric Transport Service (NEWTS) this was absolutely terrifying for me , making that call to Adam saying it was his heart not a milk allergy (as we’d first been told at Preston) is a phone call I’ll never forget. On arrival at Alder Hey he was placed in ICU and given medication to assist in slowing his heart down, we were put into emergency parent accommodation & we couldn’t believe what was happening. On top of this Archie was sent to my Uncle Alan’s with no idea how long he was going to be there for.

After a sleepless night at 6.30am we went into to see him, there are no rules as to when parents can visit in ICU, here we were told Peter was struggling and he needed to be ventilated. His veins had started to deteriorate around his medication IVs and he needed at lot more help. We were sent to Mac House to “move in” (not sure arriving in hospital scrubs and a bank card classes as moving in) we came back very quickly but on our return they asked us to leave while they tubed him as it wasn’t nice to see. While we left we heard the emergency page go off for the unit and saw so many doctors running, instinctively we knew this was for Peter. Peter went into cardiac arrest and total heart failure at 10am on the 20th of June 2023. At 10.02 am there was 29 surgeons and specialists around his bed side ready to perform total bypass surgery and put him on Extracorporeal membrane oxygenation or ECMO for short. Peter had CPR and his heart failed for 2 minutes, at this point Peter had “left the room” and was brought back by a dedicated wonderful team.

When the ICU and cardiac specialists came to talk to us they explained Peter was very, very poorly, the team were working second by second when he initially crashed, by the time they came to talk to us they were still working minute by minute. He was the most unstable baby on the unit and we were given the option of ECMO, this is one stage further than full life support, this is total bypass essentially Peter would be “offline” and it would be a time will tell situation if his heart recovers over time. ECMO is wonderful but ultimately a last resort and the risks involved sometimes outweigh the benefits. It was at this point we asked people, pray/ heal/ send vibes anything that meant ECMO could be avoided.

After 2 agonising hours we were allowed back in to the ICU to see him, our little baby boy had 17 IVs in him, a cold jacket, a ventilator and DeFib machine attached to him. We were told that Peter’s muscle lactate was at 18 points a newborns should be an absolute maximum of 2 points, this is the equivalent of us climbing not just a mountain, but the Himalayas every day for his 7 weeks with us. We were told at this point he had a condition call Super Ventricular Tachycardia (SVT) which makes the heart beat too fast, the condition is quite common but undiagnosed it’s fatal. There are two types (obviously Peter has a combination of both types). Type 1. Means he has an extra cable in his heart which touches the valves and tells it to beat again (faulty wiring) Type 2. Is a brain impulse that essentially forgets the heart has beat and panics and tells it to beat again. We now needed to get his little heart to slow down then we could look at repairing the damage from the fact it had been beating too fast for too long and this had enlarged the heart (something we are still managing) along with the heart leaks that the cardiac arrest caused (again part of his management plan). The way to do this in a baby is to medicate and follow up with surgery, our beautiful healthy little boy was not very healthy after all.

The next 3 weeks were an utter blur of medications/ procedures/ plastic surgery (oh yeah his foot needed repair where his medication had entered his skin not his vein). Peter was on what is called total paralysis to stop him moving for a total of 10 days, he was also given a number of blood transfusions (a timely reminder that if you are able too please give blood). After 10 days the specialists were happy his heart rhythm was settling by being “marinaded in a drug called ameoderone, and they started to warm him up (he was cooled to 30 degrees to help slow the heart down), I was allowed to hold him and touch him and try and be a mum again.

After 2 weeks in ICU, He was eventually moved to a high dependancy heart ward to “come down” after living his best life in ketamine land, this was awful to see, he spent 19 hours awake and screamed for at least 18 and a half of these. Slowly but surely the medication balance was settled and our little boy took his first smiles in Alder Hey. I was allowed to sleep with him in our room and Adam had to return to Mac house, being in the hospital 24/7 is exhausting, but I wasn’t leaving him. If you’d have said less than 3 months after having a C section I would be sleeping on a camp style bed I wouldn’t have believed you I HATE camping, but this meant I could be with my boy. Having my own shower and a room we could be together in was wonderful and is so limited in hospitals across the country.

Peter came home on the 7th July, under the very close observation of the Cardiac Liason team and Plastics team. We were elated but so scared we now had a little one with a heart condition. The next 8 months were filled with appointments and medications but he was home and we could be a family again.

Peter will need support for life and surgery when he’s a little older when the heart is the right size however, he’s a wonderful happy little boy that has no idea what on earth he put us though. We are so grateful for the Dr that sent us to hospital (Dr Pilkington on that Monday the 19th from Tarleton group practice) as we’ve no doubt in our mind he saved his life, he took no chances and sent us straight away to the hospital with a note directly from him. Since then he has given Peter the most wonderful care and support if you get the chance to have a Dr like that do not let them go!

Pete’s journey is far from over except now we don’t need to climb the Himalayas maybe just a few hobbit hills to keep him well. We are so grateful for everyone that supported us during that time and continue to do so every day. If the offers of doing our laundry could come back we’d love it ;)

Some information about the unit.

It costs around £2000 per day for a baby to be in ICU. Double that for a baby on ECMO watch (Peter was on ECMO watch for nearly 10 days)

It’s around £1500 per day to have a child or young person on a high dependancy heart ward

The housekeepers of the ICU unit are invaluable

We were supported by the following charities “an octopus for a preemie”, “Ronald McDonald houses” “Sophie’s legacy”

Christmas 2022 the ICU nurses on ward 1c (Peter’s ward) were forgotten and didn’t get a Christmas dinner

It costs a voluntary £30 to house you in a Ronald McDonald house but you can pay it forward (which we did) so it’s free for those that can’t afford it

We made friends there that we’ll always think of and care for

Not a single parent on that ICU can believe they are there.

The nurses have an unmatched energy for caring for a little one

Thankyou for taking the time to read Peter’s story, if you can donate we would be very grateful and the money would go straight to the unit that helped us so much.