Lucca was diagnosed with a thickened tricuspid valve at mum, Laura’s, 20 week scan. On the day he was born, doctors discovered he had an ASD, bicuspid aortic valve and dysplasia tricuspid valve. Then, at just 12 days old, Lucca was diagnosed with coarctation of the aorta when he became critically ill very quickly. This is their story, told by Laura:
At the end of February 2020 I found out I was pregnant. We were incredibly excited.
Due to COVID-19 and the national lockdown beginning in March, I was told I would need to attend my 12 week scan alone. James and I decided we would book an early scan (privately) so we could see our baby for the first time together. This was on 1st April 2020. Everything was good and there was a perfect beating heart. We announced the pregnancy the same day to everyone, three weeks earlier than ‘the normal’ 12 week announcement. Due to COVID-19 and the risk I was now at with my job in a care home, we felt it best to announce it earlier.
All seemed well and there were no concerns whatsoever. Before we knew it, my 20 week scan was approaching. Again, I would need to attend this alone so we arranged a second private scan.
This was positive. No concerns were noted and all seemed perfect. We were told we were having a boy and the excitement grew.
My 20 week scan with the NHS was scheduled for the next day so I went, feeling positive and assured there was nothing to worry about.
However, that was not the case. The sonographer noticed ‘an enlargement of the right atrium,’ so she called her colleague in for a second opinion. Her colleague disagreed and felt everything looked normal.
Luckily for us, the sonographer went with her gut and she referred us to Fetal Medicine. She said I may hear from them in a week or two. I received a phone call that afternoon, and was asked to attend Fetal Medicine the very next day!
I was terrified. Why so soon? Again, I had to go alone.
The scan seemed to last forever, it was very in depth and thorough. I was then told that my baby had some thickening of his valves and that the tricuspid valve was slightly displaced. Both issues should not affect baby, we were told, and I was booked in for another check up at 32 weeks.
Luckily, restrictions had eased a little and James was able to attend with me. We were told this time that he had ‘prominent, honeycomb like texture of his left ventricle’ as well as the previous diagnoses. Nothing prepares you for this. But we still did not register this as anything to do with congenital heart disease (CHD). We were told all of these issues were within normal ranges and they didn’t feel it would affect the baby once born. He could be born at the local midwife led unit as planned and would only need a non-urgent follow up once he was born. The appointment was made for February 2021 (around three months after his due date).
Throughout my labour, which was spontaneous, his heart coped fine and there were no concerns. Lucca was born in hospital (labour complications not related to Lucca or his heart issues) on 4th November 2020.
As Lucca was classed as an inpatient they decided to carry out his ECHO straight away. He was around seven hours old. This ECHO confirmed what the antenatal scans had shown, but with more clarity. They diagnosed a moderate ASD (6mm), bicuspid aortic valve and a dysplastic tricuspid valve. Again they weren’t too concerned and said they would follow up in February as planned, and we went home. Our perfect family was complete. We still did not register any of these conditions as CHD.
Things changed when Lucca was just 12 days old.
James had returned back to work and it was my first day all alone with Lucca. He had not been ‘right’ for a couple of days – he was fussy, difficult to settle, occasionally off his feeds, when he cried he sounded like he had a sore throat and he was breathing heavily.
I called James at work and said he didn’t seem right still and something felt off, maybe he had a chest infection or something? James told me if I was in any doubt to call the GP. I was not sure still, but my gut told me I needed to call.
We saw the GP that afternoon. She checked him over, all seemed well. What a relief! But she said she would see if the local paediatric team would check him over just to be sure, which I of course agreed to.
We went straight there, around 13 miles away, and again due to COVID-19 I had to go in alone. The nurse began checking Lucca over and getting his obs. All was well and I was sure we would be heading home soon.
The nurse began to look concerned. I asked what was wrong and she explained she was going to get her colleague. A senior nurse arrived. They were both getting increasingly concerned. The next thing I knew, a doctor was called in. I just remember sitting there blankly, confused and wondering what all the concern was for. He was fine wasn’t he?
The doctor called the crash team and started Lucca on oxygen. When she scooped him up, he looked blue and grey, limp and lifeless. I was horrified. She ran out with him to the treatment room opposite. I was in tears, what was happening? Where had my baby gone? Why?
The nurse came and told me to call James and get him to come ASAP. I was hysterical. “You need to come quickly, they’ve taken Lucca away, he has collapsed, I think we have lost our baby”.
I said to the nurse, “Its not his heart is it?” I explained the issues I was aware of and she ran out of the room.
The next person we saw was the doctor. He explained that Lucca was very, very poorly and they did not yet know why. He was being treated for sepsis. They also suspected he may have COVID-19. And, after examining his heart, they now suspected coarctation of the aorta. James and I were clueless as to what that meant.
The doctor drew a diagram and explained the arch of the aorta was narrowed and his heart was essentially pumping against a closed door. I went numb.
When we eventually got to see Lucca, he had a cannula in his skull because his veins had collapsed. He was alert, though, and seemed okay considering everything. His SATs were only 55% and his blood pressure was very low. He took a feed and we had a cuddle, thinking everything would be ok.
Wrong. He collapsed again, struggled to breathe and went blue and lifeless. We had to leave him again.
I broke down. Why was this happening to us? Why my baby? I felt so helpless.
The doctor returned after a little while and explained how poorly Lucca was, that he was fighting with everything he had. But, ultimately, the fight was killing him. His heart was failing.
We had to make the decision to have him sedated and intubated, so the doctors could control his breathing and let him rest a little. The retrieval team were called, and at around 2am, they transferred Lucca to Southampton (around 2 hours away). We had to make our own way there.
We arrived before Lucca did, though the journey seemed to last forever. We waited.
Eventually, we got to see him at around 6am in PICU. He was tubed up, lines everywhere, but looked peaceful though. We just sat with him.
The doctors informed us they had done an ECHO and confirmed Lucca had coarctation. Also, his left ventricular (LV) function was very poor. He needed surgery ASAP.
The surgery went well and Lucca returned back to PICU. He continued to fight. Two days later he was extubated and continued doing well. His LV function remained poor but everything else was improving. We were moved to high care after day three. After three days in high care we moved to Ocean Ward for a further four days. Lucca was gaining weight, and, as he was thriving, we were able to go home with some medication to help his heart function.
Two weeks later we saw our local cardiologist for a follow up. Again, due to COVID-19, only one parent was allowed in. James went. He came out after an hour or so and told me, “Its not good news, his heart function is very poor and we need to go back to Southampton”.
“No, no, no not again!” I thought. “I cant do this.”
The cardiologist explained that Lucca’s heart function should have improved by now. So, we went back to Southampton for several tests, genetics, viral infections, swabs, anything and everything it seemed. All these tests related to cardiomyopathy (heart failure). After two days, we went home, still not knowing why Lucca’s heart wasn’t improving.
Lucca now sees his cardiologist on a four weekly basis and we are yet to find answers as to why he is in heart failure.
He has been referred to Great Ormond Street Hospital (GOSH) and hopefully we will find some answers. There’s lots of good news though: he has no re-coarctation, his scar is healing well, he is thriving and gaining weight, he is hitting his milestones, his ASD is no bigger, his valves are stable and there is only mild regurgitation (with no plan to operate).
Lucca is a very happy, content little boy and has no idea what he has been through, or indeed what he has put Mummy and Daddy through!
Had we had more knowledge of CHD we would have known that the signs and symptoms he had (swelling, breathing rate, fussiness, difficulty feeding) were all related to his CHD and heart issues.
We were lucky.
We want to help raise awareness and are working hard on this. If we can help just one family avoid going through what we have, it will be worth it.
Lucca’s journey continues… he is a heart warrior.
Find out more about different types of congenital heart defects here.