AJ’s Story

AJ tragically passed away after open heart surgery when he was one-year old. His devastated mum, Lorraine, bravely shares their story:

AJ was born on Saturday 30th October 2021, after a relatively uncomplicated pregnancy. All clear on the 20-week scan also. His birth was the day a real-life 9lbs 10oz angel entered our lives. He was so perfect, so precious, so peaceful.

Although a heart murmur was detected at birth, after his follow-up appointment on the 9th November 2021, he was discharged with, ‘No further follow-up required,’ as a heart murmur was not heard and his oxygen levels were normal. We were feeling blissful and ready to be parents again to this wonderful blessing. I often would just stare at him for hours. I always longed for a son, but after my left ovary was removed due to an ovarian cyst, combined with my age (43 at the time), I never believed it was possible – but miracles happen!

AJ fed well, slept well and fell into a routine easily. He showed no obvious symptoms, apart from sweating whilst having his bottle, but this was not a cause for concern when raised at a doctor’s appointment. He was gaining weight, growing on the 91st centile steadily.

When he was six months old, AJ had an accident at home, which was not serious, but I wanted to make sure, so I took him to A&E. Luckily, he was fine – no broken bones etc but a distinct heart murmur was heard…again. This was a shock.

We waited for almost two months for a referral, to be told a distinct murmur was present.

Another wait of about two months for an echogram of his heart. I distinctly remember this being what I perceived to be the worst day of my life. The sonographer was analysing his heart for such a long time, to the point he fell asleep. As we waited, we were informed that he would have to be admitted to hospital urgently. AJ had ‘severe’ aortic stenosis. His aortic valve should have been 14 mm but AJ’s was 4mm at a push and becoming more narrow as he grew.

By this time AJ had been walking for about three weeks. The more active he was, the more pressure it was placing on his heart and it was enlarged. We were told his heart was working 80% more than it should.

He was admitted on Thursday 27th October. After three days and nights of observations, it was concluded AJ was coping with his condition, but needed emergency open heart surgery as soon as possible to correct it.

Usually, this would have been done that week, but AJ was such a fighter. He smiled every day and played. Honestly, to look at him, nobody would ever know his heart was essentially a ticking time bomb.

We were discharged from hospital a day before his first birthday. Now I can see it was a blessing that we got to share his birthday at home with his siblings. We tried to continue life as normal for his sake, remaining optimistic that surgery was inevitable, so we might as well cram in as many activities with him as possible. We visited Mrs Claus at Lotherton Hall, we saw the Christmas Lights in Leeds, we put up the Christmas tree, danced and sang songs.

The operation was planned for November, but AJ caught hand foot and mouth disease from nursery, so it was delayed by one week.

On Monday 5th December, the operation day was here. AJ had to be on the ward by 7.30am – waking a sleepy boy that morning was difficult. He usually woke up to a bottle first thing in the morning, but this morning was different. It was nil by mouth. However, AJ did not fret at all that morning. He smiled as he always did on a car journey and we bounced onto the hospital ward hoping and praying that he would leave with a healthier heart.

The first operation was for a diagnostic catheter in order to ascertain the procedure for the open heart surgery.

At 8.30 am, the walk down to the surgical theatre was difficult. We reassured him, sang to him but when I observed the vastness of the room, I walked straight back out with him in my arms, tearful. I really did not want to leave him, but knew I had to. He was on my lap when they put him to sleep.

Watching this beautiful body go limp and his smile fade, as he wondered why mummy and daddy were leaving him, was the most emotional action I have experienced.

By 9.30am, I received a call to return to the ward. I had left to grab a coffee. My partner called to ask me to return and my heart sank. I just knew something was wrong.

I dashed back to the ward to see a flock of surgeons gathered around my partner, wating for me. The look on their faces told me everything. This was one of those times where no words were necessary – a silent horror movie was being filmed right before my very eyes and the main character was my son. My legs almost collapsed, I could not breath. AJ had gone into cardiac arrest. They were doing CPR. They now had to do the heart operation immediately!

AJ was in theatre for almost seven hours. When we finally got to see him, the beautiful boy I had on my lap only that morning was attached to so many machines, with tubes protruding from every part of his little body. He was on an ECMO (life support) machine. This gigantic machine was doing all the work his little body could not do.

We were given hospital accommodation that night. I could not sleep. I kept calling the ward. The last call I made was after midnight, in which the nurse said he opened his eyes. Our boy was fighting for his life. I prayed.

However, at 2am Tuesday morning, my phone rang. I could not face any more bad news, but at that time of night you know it is. AJ had a bleed on his lungs, but they were trying to stabilise it. They would inform us again if it was successful. I prayed again.

At 5.30 am we get another call to return to the ward. The walk from our wing to ICU was the longest walk of my life. I asked God to save him.

AJ was critically ill and we were informed to prepare for the worst. The bleeding on his lungs was proving difficult to stop. I refused to believe at this point and I urged that, as long as his weak heart was beating, there was hope. Surely, there had to be hope? We witnessed a flock of surgeons all frantically trying to save our boy. I pleaded with God to protect him.

By Wednesday, he was stable but still very critical. I held the only hand which did not have tubes in it -I read to him, I sang his favourite songs and anything to let him know I was there. I was by his side.

However, by Thursday, his pupils were not responding to light. He was going to need a CT scan. As a mother, you know. My boy looked different. His body was so swollen, he looked so ill. No parent should ever have to witness their beautiful baby so ill. I physically could not take seeing him this way. I felt helpless and immense guilt.

The results from the scan was the news no parent should have to hear. AJ’s cardiac arrest had resulted in lack of oxygen to his brain. His heart never recovered and he was not going to make it. It was the ECMO machine preserving his tiny body. That news. Those words. Those facts. I felt the floor open up; we were now in living hell. The confusing reality that my body had harvested his life and I was now faced with his death. It all seemed so abrupt, so cruel. A life which had just begun, suddenly just …stopped. How? Why?

Telling his older sisters was tragic. The tears. The pain. Our family, our friends. The only word I can use is ’empty’ – both physically and emotionally empty.

We have lost a beautiful, happy boy who had a smile that could light up anyone’s life. AJ was never afraid or shy with people. As long as you smiled at him, his face would light up immediately. Our hopes and dreams for him vanished into the ether. Dates, plans, visits are now painfully gone. Everything we hoped for, all that we had mentally and emotionally carved out out ahead of time, is now painfully swiped away.

AJ may not physically be in this world, but he is still our world and will always be. He was full of joy, all day every day. He never stopped laughing at his big sister. He was and will always be our sunshine boy.

Maybe if he had been given an echograph earlier at his initial two week check he would he still be here? The delays in between referrals were way too long. I hope that by sharing this story, it raises awareness.

Never in my life would I have anticipated this outcome. No one should have to.