Tetralogy of Fallot: Noah’s Story

Noah was born with Pulmonary Atresia and Tetralogy of Fallot, while his twin, Finn, is heart healthy. Here, mum Kirstie tells their story:

Shortly after birth, Noah was taken to NICU. He stayed on CPAP (continuous positive airway pressure therapy) which helped keep his valve open in order for him to live. He needed this for four weeks as he grew.

We were then transferred to Alderhey Children’s Hospital, where he was to undergo surgery. Noah was down for having a stent put into the valve to prop it open until he got big enough for a ‘full fix surgery.’ However, after attempting this, surgeons realised it wasn’t possible because his valve wasn’t straightening out.

After this surgery, Noah went back on to NICU. We were told he was to now undergo a second surgery, a few days later, to put a shunt in him instead. This is like a temporary valve, instead of trying to force the one in him open.

The day came and he went down for a five hour surgery, then back onto NICU. We were told it all went well and the next 48 hours were of the upmost importance to keep him safe. Later that night around 12am (six hours after surgery) we got the call. Noah had gone into cardiac arrest and we were told to get to him ASAP.

We rushed over to the ward (we were staying close by at the Ronald McDonald House) and Noah was put on ECMO (this is a machine that basically does all the work for him, pulling his blood out and around his body and back in again). We had many doctors and specialists telling us that this could be it for Noah. He may not survive…

After 36 hours on ECMO, Noah came off it! My boy had pulled through, to everyone’s amazement and very quickly!

We than were moved onto HDU, which is a step down from NICU. Noah was there to recover and wean off medication. He also had three drains to get rid of, still in his body from surgery. This took weeks, during this time he had to go through a withdrawal from his drugs due to his pic line leaking and the drugs not going into his body overnight. Shortly after this, he got an infection in his wound and so had to start antibiotics.

Finally we got to go home with an NG tube in at the end of December.

Noah is due to have his second operation in the next few months for a full fix.

Update September 2020

We were sent to Manchester Children’s with Noah as his SATS had dropped to below 75%, averaging about 67%. After a few days in Manchester, we were transferred back to Alderhey as it was decided he would need his corrective surgery.

Once we arrived at Alderhey, he was booked in for a CT scan the next day so the surgeons could plan what they needed to do for him. Unfortunately after this had taken place, Noah got an infection from the line put in for the scan. This meant that he had to undergo two weeks of antibiotics and his surgery was delayed. During this time his SATS were getting lower and lower, we finally came to the end of the course of antibiotics and his surgery was booked in for the following Monday. However, two days before we were told this was now cancelled as they have had to stop admissions to the ICU ward due to COVID.

We were devastated and unsure of what was now going to happen. Late Sunday night we were then told the surgery was back on and the problem had been resolved. I rushed back over to Noah and stayed the night with him, ready for surgery in the morning.

On Monday the 20th July Noah went for surgery around 9am. He was in there seven hours we were told he may be out around 2 or 3pm. As this time came and went, we started to panic. We were finally told we could come see him at around 5pm and we rushed over to see how he was.

It had gone amazingly well! The surgeons were happy and no problems occurred – it just took longer than expected to complete!

So Noah has now had his ‘full fix’ (the traditional tetrology of fallot fix) and a ‘patch’ done for his atresia instead of a conduit, which is even better as this will grow with him and he may not need any more intervention until his late teens/early twenties – and this could possibly keyhole surgery. He was fighting the drugs to make him sleep and rest, so by the next day he was off this and had his drains out too.

One week after surgery we were allowed to take Noah home where he is doing really well and getting stronger by the day!

Find out more about Tetralogy of Fallot here.