(Toby's story involves intensive care, surgery, and some personal thoughts which could affect some people)

We found out there wasn't something quite right with our baby's heart at the 20 week scan, at the time they didn't know what but it just didn't look right so we got referred to the specialists. It took another 2 scans, both hours long, with fetal cardiologists in Southampton to diagnose it as a Pulmonary Arteriovenous Malformation (PAVM) - there's been less than 50 documented cases of it happening with babies in utero all of which had very mixed outcomes. Essentially, it's an extra blood vessel developed between the main pulmonary artery and vein which forces more blood into the heart, taking it away from his right lung. The risks as he grew were heart failure and hydrops, and then after birth, hypoxia and heart failure until he could have a procedure to block the vessel.

Because of this, they couldn't tell us what the likely outcome will be, just that it can be treated if we got past birth, and that was both good and horrific to hear. So from there began the frequent monitoring of biweekly scans to make sure he was coping.

If I'm being honest, I couldn't enjoy my pregnancy after we found out. I cancelled the plans for a baby shower and we refused to buy anything in preparation all because we didn't know what way things were going to go. We spent it on high alert for movements, extra private scans on top of the already frequent cardio ones. There is nothing worse than the unknown, we had so many questions and none of them could be answered with any certainty.

Each scan did get easier to go to and the likely outcomes steered on the positive side, at least to reach birth, Toby was coping just fine despite this extra blood vessel getting larger - looked like a 5th chamber. He had mild heart enlargement and a very very enlarged pulmonary vein where it had to cope with the extra blood and pressure. No adverse signs that he was struggling. Always a wriggler. He was growing beautifully too - sat between the 80th and 90th percentile!! Toby was born a very respectable 7lb 10oz on 10th October 2024.

He was born via emergency c-section and whisked away straight away for assessment and oxygen. We got a moment to hold him after he was hooked up and stable and then he had to be taken back to NICU. He was later transferred to high care cardio in the general hospital, I watched that from my ward window. That time was insanely hard. We were in different buildings, not just a few floors down, and I wasn't able to walk to him as it was too far away with roads and stairs. I became pretty restless and I pushed for discharge so 48hrs later I was able to join him and I was fortunate enough to stay on the ward in a side room until I was more mobile to stay at the Ronald Mcdonald House. Connor had a deal just as hard, he worked so hard with our eldest to make him feel secure and settled in his usual routine, and running up to the hospital whenever he could in between.

It was decided he'd have catheter embolisation to block the PAVM on day 5 to give him time to grow and adjust to the outside world but it got to day 3 when he started to struggle and we had a very scary moment where he required a crash call after he had dangerous desaturations, the AVM finally raised its ugly head and the op was brought forward to that day. That moment was always so surreal. I was with him until 7.30am, chatting with his nurse about how well he was doing (even talking about how quick would he be discharged if everything continued to go well), and I decided to go back to the little room to be able to lie down for a quick nap - when I got discharged I barely left his side. I woke up at 8am to alarms and hearing people running and I remember saying to myself "I hope whoever it is will be ok". It never once crossed my mind that it was for Toby until I got a tap at the door, he was absolutely fine when I went and until that point nothing significant had happened but it just shows how quick things can turn. That occurred in just 30 minutes after I left him.

The wait while he had surgery felt like a lifetime especially as the surgery took longer than expected. The PAVM was bigger than they thought so the blocking therefore took a bit longer, for context the size of his was 7mm and the threshold for surgery for adults is just 2mm! It was also funnel shaped so the device kept shifting until it finally found its place.

Because he had this from day dot, all the blood vessels in his right lung were "wired" differently and the size of the PAVM was significant compared to his newborn lung meaning it wouldn't be as effective as his left lung but his sats immediately recovered from 60-70% to the 90s as soon as it was blocked off! Not too long after, his enlarged heart recovered and settled to a normal size as well!

He had some time in PICU before going back to the cardio ward and countless tests for the now blocked PAVM and other various things. He had an insane amount of peaks and troughs with his levels which was a rollercoaster to say the least. He then started having desaturations again with no obvious reason (not as drastic as before the blocking, going down to the 80s) and he started requiring oxygen again but an echocardiogram flagged up that one of his heart chambers was slightly under developed because of the nature of the PAVM, as well as finding another heart condition, so that area wasn't used to normal blood flow which was causing a bit of temporary regurgitation... it just needed a few days to stretch out and he was back to having normal sats again.

On day 10 we got to go home with a 6 month course of aspirin and various follow ups to come.

Toby has had a full MOT done. He was tested for HHT, a genetic disorder which is the most common cause for PAVMs, but that came back negative so his one was deemed idiopathic. He was screened in his abdomen and later had to go back for an MRI in his brain, PAVMs are much rarer compared to AVMs found elsewhere so there was a small chance he could have more, and none to date have been found! At his one month follow up and at the MRI at 4 months, all observation tests came back normal and his sats the same! All of which makes it really reassuring that the PAVM would be his only one.

Our time on the ward isn't quite complete, he still has to have monitoring and may need to have further surgery to close a moderate sized ASD hole which was found while being treated but the hope is that it'll close on its own in at least enough that it won't cause any problems.

We cannot thank the cardiologists and the Ocean Ward (Children's cardio) enough and the gratitude we have will last for our lifetimes. The care and treatment Toby got meant months of uncertainty were settled and we could bring him home safe and well. They cared not only for Toby but us as a family through all the ups and downs, hugs of joy and comfort, words of encouragement and kindness. They are all absolute angels to us. It isn't just the Ocean ward that had a hand in saving Toby, it was the Fetal Medicine team, Genetics, Radiology, NICU, and PICU, and that's just the ones I can remember through the haze.

The very least we can do is work together as a family with your support to raise some money so we are all walking the "Walk the Test Way" (5 miles) for Southampton Hospitals Charity.

Thank you for taking the time to read Toby's story.

(monies are sent to The Rotary Club of Romsey Test Trust Fund who run the event to be distributed to our chosen charity - Southampton hospitals charity - "All fundraising must be done through the Rotary Club of Romsey Test Trust Fund for your charity. Rotary Club will consolidate all donations & distribute funds to your chosen charities after the event.")