Critical Aortic Stenosis – Lennox’s Story

By the time Lennox’s heart condition, Critical Aortic Stenosis, was diagnosed, doctors had been working for two hours to save hime. Lennox’s mum, Danielle, is forever grateful she trusted her instincts when she first felt something wasn’t right with her baby. This is their story:

After a lovely ‘normal’ pregnancy and birth we got to take our gorgeous 7lb 4oz baby boy home! On day three, I noticed something wasn’t right with Lennox. I couldn’t tell you what it was, but I just knew something wasn’t ok.

We called the birthing centre and were told to take Lennox to A&E as he sounded dehydrated. We arrrived at Southampton General Hospital and he was treated for around two hours for dehydration. I was expressing milk and this was then given to Lennox via syringe.
The doctor came over and watched Lennox breathing. I remember saying to my husband that the doctor was scaring me. I knew something was wrong.

Critical Aortic Stenosis Lennox

The doctor explained that she thought Lennox had an infection. They started a broad-spectrum antibiotic right away. A few moments later, the head paediatrician came to assess Lennox. He was working so fast on our tiny baby and our husband asked what was happening. He said, ‘Your baby is very sick, and I need to work fast.’

From that moment everything was a blur…they rushed Lennox to a resuscitation room, where doctors swarmed around him. They performed an echo scan and I heard the word ‘cardiac’ being shouted.

Critical Aortic Stenosis Lennox

My husband and I stood watching in absolute horror. We were then told to give Lennox a kiss and go to the family room as he had to have a central line and be put to sleep.

We called our family and were taken up to a different room outside PICU. The consultant came in and explained that for two hours they had been saving Lennox’s life. His blood acid levels were really high, and his tiny organs were failing.

We waited another few hours until Lennox was stable and then we were told that he had a condition called Critical Aortic Stenosis. He needed an operation that night to balloon open his valve.

Critical Aortic Stenosis Lennox

Lennox was too poorly to have the operation that night, but he had it the next day. We were in hospital for 10 days. This was the scariest time of our lives and we are so very grateful for everyone who helped save his life. We really don’t know how to thank everyone.

Lennox is now six months old. He is well and thriving. He had open heart surgery at eight weeks old and will need more operations in the future.

I wanted to share my story as I hope that it can help other families – we had no idea our baby had a heart condition and it came so close to taking him. Always trust your instincts!!

Critical Aortic Stenosis Lennox

Update 2020

Lennox is doing fantastically! He is now on nine month cardiac reviews. He will still need more open heart surgeries, but we are hoping to get another five years out of this valve. He’s starting nursery in September, just two mornings a week, but he is so ready. He is so kind, gentle and just loves to play with others. Also has A LOT of energy – you’d never know that he actually has Congenital Heart Disease (CHD). I’m just in awe of him, the proudest mum ever.

I’m also 23 weeks pregnant with another little boy! We had our fetal medicine scan at 20 weeks exactly, and had a massive shock. Originally we were told that Lennox’s CHD was not genetic. So I was nervous for the scan, of course, but I really didn’t think this baby would have a heart condition.

It turns out he also has Aortic Stenosis, just like Lennox, and possibly Coarctation of the Aorta. We won’t know about the coarctation until baby is around 5 days old.

We were obviously so upset and I was just truly gutted. The one thing I had been saying this pregnancy was that I just couldn’t wait to take my healthy baby home and enjoy all the newborn moments with no anxiety.
I’ve come to terms with it a lot more and I’m feeling better now. This baby has such a better chance then my poor Lennox did. He will be cared for right away and will have his valve balloon done once he’s stable.

I’m honestly so grateful that his condition was found at the scan. I couldn’t thank them enough! We have our next scan at 28 weeks and I’ll be seeing my midwife for the first time too. I’m going in with a whole list of questions!

Thank you so much for all the work you do at Tiny Tickers. It really helps mums like me feel so supported and also inspires me to keep raising awareness.