Gabriel’s heart defects were diagnosed before he was born. Here, his mum Jen tells their story:
Like many heart parents, we found out about Gabriel’s congenital heart disease (CHD) at our 20-week scan. Our world was completely shattered with those awful words, ‘I think there’s something wrong with your baby’s heart’.
We were referred to Fetal Medicine in Edinburgh the same day, then Glasgow the following week, where we received the official diagnosis – Double Outlet Right Ventricle (DORV), Transposition of the Great Arteries (TGA) and a Ventricular Septal Defect (VSD).
We were told these defects were rare and serious, our baby would need at least one open heart surgery to survive, possibly in the first few hours of life, and in the words of our consultant, it would be a ‘challenging’ journey.
We had been told not to Google it, but of course we did, and I am thankful for it in a way as we found Tiny Tickers. Reading other parents’ stories gave us so much comfort in those hard days following the diagnosis.
Just a month later COVID hit and lockdown began, I am so thankful we were able to attend my scan together, I can’t even imagine how hard it has been for women having to receive news like that alone.
The rest of my pregnancy was spent in lockdown and soon we were heading back through to Glasgow for a planned induction, so Gabriel could receive the care he needed as soon as he was born.
He arrived one minute into 20th June, 7lbs 4oz, pink and crying. We were allowed a quick cuddle before he was taken away to NICU for assessment.
He was doing so well that, after only two days, we were transferred over to the children’s cardiac ward. The VSD was allowing his blood to mix and his oxygen saturations were in the 90s, so he didn’t need surgery straight away, which was amazing news!
Gabriel’s breathing was a bit fast but apart from that you wouldn’t think there was anything wrong. We were on such a high when only five days after his birth we were sent home. After expecting a long hospital stay, we were delighted to be taking our perfect little boy home. We were warned that in three to four weeks he would probably start to struggle, which was terrifying and that anxiety was always there, but we were just so happy to be going home.
The next week or so passed in an exhausted but happy daze of meeting grandparents and trying out our new pram. Gabriel had lost a bit of weight, we knew this was normal after birth, but as the days went by, he seemed to be sleeping more and taking less and less milk. As first time parents it was hard to know what was normal, but on the 6th of July, when he was just over two weeks old, it became obvious he was really starting to struggle with his breathing and I noticed his feet had turned purple. Panicking, I took him to A&E in Edinburgh and our hospital stay began again.
The time in hospital was tough and made even tougher by the COVID restrictions. We were kept in isolation for three days until Gabriel’s COVID test came back negative and then only one parent was allowed on the ward.
My husband would come after work, I would get out of the ward for a break, then we would have a brief five minutes to catch up before he drove home alone to a house still filled with flowers, cards and gifts from Gabriel’s birth.
With no date yet for surgery we were facing an indefinite stay as Gabriel continued to struggle to feed and gain weight, even with an NG tube. We began to dread every feed as most of it just came back up. Blood also started appearing in his nappies which I knew was a sign there was something seriously wrong.
One particularly awful night I couldn’t get him to settle and his temperature soared dangerously high to 39 degrees. The doctors took him away as sepsis and meningitis were mentioned and I could hear him screaming in another room as they attempted to insert IV antibiotics into the tiny veins in his hand. After the antibiotics kicked in, his temperature came back down. It turned out to be a kidney infection, but it felt like just another thing for his little body to deal with when he was already so weak.
It was becoming obvious that surgery was going to have to happen soon and, although I knew this was the case, seeing the words ‘heart failure’ on his notes was horrible.
After two weeks in hospital in Edinburgh we were given a surgery date and amazingly were discharged for the weekend with instructions to check into the cardiac ward in Glasgow on the Monday morning.
Upon arrival in Glasgow, the consultant looked at Gabriel, read through his notes and decided there was no way the operation could go ahead. With the blood in his nappies still ongoing, he wouldn’t be able to go on the bypass which his surgery required. He was also becoming thinner and thinner. Looking back at photos, we realise now how ill he looked at this point. But to us he was just Gabriel.
We felt defeated and settled into the ward. The plan was to get him on a new feeding regime to get bigger and stronger, so we knew we had a long road ahead. Luckily on the cardiac ward both parents were allowed in so we were grateful to be together!
The next day was the worst day of my life. We had just given Gabriel some milk through his NG tube and I was holding him in my arms when he was sick and suddenly choked, inhaling milk into his lungs. He went rigid and let out a strange cry as my husband shouted for help. Nurses and doctors came running, at one point my husband counted eleven doctors in the room as they tried to save our little boy. The monitor showed his oxygen levels had dropped to 53% and there was a tiny oxygen mask over his face. I couldn’t watch, I stood with my face to the wall, head in hands unable to face what was happening. Gabriel was taken to intensive care and the doctors said it could be a couple of hours before we could see him while they tried to stabilise him.
The next few hours were agonizing as we sat amongst the chaos of our room.
When we were finally allowed in to see Gabriel in PICU it was a huge shock. Our baby was in the middle of a room, hooked up to what seemed like hundreds of wires and tubes. He had been ventilated and sedated and his face was all puffy and grey. The nurses were amazing and explained all the machines and medicines to us and that someone would be with him constantly all through the day and night which made it seem slightly less scary.
The plan was to give his body a rest before surgery which he now desperately needed. His feeds were stopped, and he was put on a high-risk abdomen plan to give his stomach time to heal from the bleeding.
We were moved into family accommodation at Ronald McDonald House and spent the next week or so sitting by his cot, talking to him and holding his hand, hoping he knew we were there with him. There was some concern that after his choking episode there may have been some bleeding in his brain, so a CT scan was scheduled, and we waited nervously for the results. Thankfully, there was no bleed, but the monitors were still showing different oxygen levels on each side of his brain which was causing a bit of concern.
After he remained stable for a few days, a date was planned for surgery. They had decided to go ahead with the full arterial switch and VSD patch operation and we met the surgeon and anaesthetist to sign the consent forms and go through all the possible risks and outcomes. We were warned that it was a very long and complex surgery and that he had already been so unwell it was likely he could end up on ECMO (life support).
The day arrived and we came in to take him to theatre after a sleepless night. We waited and waited, but soon realised as time went on it wasn’t going ahead. Unfortunately, there had been an emergency and we were rescheduled.
The same thing happened again with the next date. It was hard after all the build-up, but we were so thankful that Gabriel was now stable and we were getting another few days with him.
When the operation went ahead on 3rd August, he was six weeks old. We walked with him to the theatre doors and it didn’t feel real. We spent the day away from the hospital for the first time in weeks and it felt so strange to be out in the world again, away from the beeping of machines and obsessing over numbers on the monitors.
That evening, we got the call from Gabriel’s surgeon to let us know surgery had been a success. The operation wasn’t over, but it had gone as well as it could have, and they were about to close his chest. It was the best feeling, and we will never forget that moment. We thanked him, but ‘thank you’ doesn’t seem enough – there are no words to explain how grateful we are to him and his team.
Back at the hospital we met with the surgeon and he talked us through how things had gone and explained that, although it had gone well, the next 48 hours were critical and a lot could still go wrong.
Around 9pm that night we got to see Gabriel back in intensive care after a long day in theatre. He hardly looked any different, apart from the chest drains and the big dressing on his scar. We were already so used to the wires and breathing tube. T
he next morning you wouldn’t even think he had been through such a big ordeal; he was awake and moving his arms around! I think everyone was surprised by how well he had responded.
In the days after surgery there were a few issues with his heart rate dropping, but we were reassured this was fairly normal and after some time on a pacing machine it levelled out. There was another scare when it was suspected he had NEC (Necrotizing Enterocolitis) after restarting milk. I felt the panic returning that we were going to lose him, but thankfully his stomach x-ray came back clear.
Over the next week the wires and tubes started to slowly disappear and we were back on the ward. It was a huge adjustment for us, leaving intensive care, but it was amazing to be able to pick him up and cuddle him ourselves without needing help from several nurses.
It felt like slow progress at the time, but after surgery Gabriel went from strength to strength. He was gently weaned off morphine and started having some milk again himself after ripping out the feeding tube. He even started to slowly gain a little bit of weight. We were so proud of how well he was doing, and he continued to amaze us with every challenge he overcame in his recovery.
There was still the question of whether he had suffered any damage to his brain, so an MRI was scheduled. It was a very strange experience, putting our tiny baby into the huge MRI scanner. The results came back and showed that there was some damage on the left side of his brain and a large bleed between his brain and skull, which had probably happened during surgery. It came as a total shock to us after the CT scan previously coming back clear and felt like another devastating blow after a long seven weeks in hospital.
As Gabriel was still so small, they decided it was impossible to tell what the outcome of the brain injury would be. We were fortunate that the bleed did not need any further intervention. He wasn’t showing any signs physically and the hope is that it will repair itself.
Two days after the MRI result and less than three weeks since surgery we were discharged!! It was amazing to be home, but the first few weeks at home were difficult. I really struggled with the anxiety of not having doctors and nurses constantly checking him and I found it hard to believe he was ok after everything he had been through.
As time passed it became easier and although the worry never completely goes away, it becomes more manageable.
In a lot of ways, I feel like we were very lucky. We were diagnosed antenatally, so we had time to prepare and we have a great support network of family, friends and colleagues.
The online heart parent community is amazing and I was very fortunate to meet the lovely Abbie through Tiny Tickers Parent’s group, when we were at a similar stage in pregnancy. We have supported each other ever since.
We also can’t thank the brilliant NHS staff enough for everything they did for us last year. Ward 1E almost felt like home to us by the time we were discharged – it sounds weird but we also have some good memories from our time there.
Gabriel is now seven months old and doing so well. We celebrated our first Christmas together as a family which was something I could never imagine on our worst days in hospital. So far, he is meeting all his developmental milestones and we are on six-monthly checks with cardiology.
Looking at him now you would never believe everything he has been through. He now has mild Pulmonary Stenosis and we have been warned he is likely to need further surgery at some point, but for now we are so grateful to have our beautiful, happy boy at home and healthy.
Find out more about different types of congenital heart defects here.