We were first told that our unborn baby, Lennox, had an abnormality of his heart at the same time we found out that we were having our third baby boy.
My partner Jordan and I were so excited about the news that we were having another boy that we didn't notice the amount of time the nurses spent looking at his heart. It only hit us when they called for someone else to come in and take a look at the monitor. At that moment it was confirmed that the left side of his heart was really small.
A week later, we had an appointment at The Royal Victoria Infirmary (RVI), in Newcastle upon Tyne. We were 20 weeks into Lennox’s pregnancy when he was diagnosed with hypoplastic left heart syndrome.
When a doctor talks about all these surgeries and procedures that your unborn baby will need within a week of birth, it is nothing less than terrifying. This is a baby, my baby. The baby that I would get excited about every time he kicked, every time he moved and every time he hiccupped, all the while knowing that in fact he wasn’t as healthy as I thought.
I remember saying, ‘I have two healthy boys, how can he be so poorly?’
The doctors discussed the risks of continuing with the pregnancy and the word abortion stood out to me the most. I can remember that as soon as that word was said Jordan and I gave a firm no. I knew I could never fix his heart, but I knew just how much love we could give, and I knew we would be by his side through thick and thin just like we would be with his brothers, Riley and Cole.
I would never give up on my boys just because things got hard.
Lennox was born on 1 September 2015 at 12:05 on a Tuesday afternoon. He was born at the RVI with no complications, weighing a healthy seven lbs three ounces.
He was so beautiful, and blue, which was to be expected.
I got to have a few precious seconds with Lennox before he had to be taken away with his own little team who waited by my bed. He was taken so soon because he had to be put immediately onto a medication which went into his belly button to help stablise his condition.
Two hours after birth, Lennox was transferred to Newcastle’s Freeman Hospital, and his Dad and I followed. We didn’t know much. All we knew was that Lennox was going to the best place to help him. We were relieved though, to know that our little family could stay together as we had been given free ‘Home from Home’ accommodation at Scott House. Scott House is located on site and supports families with seriously ill children being treated on the Children’s Heart Unit. But the best part was that both Riley and Cole could live there with us.
Despite only giving birth a couple of hours before, I was determined to be with my son. I waddled to the Paediatric Intensive Care Unit (PICU) and actually I didn’t feel any pain. I just wanted to see my baby.
We were greeted by his nurse and walked to his bed side and there he was - my baby boy, my Lennox. I looked straight past all the tubes because at that time they meant nothing to me and all I saw was this perfect boy who was going to break my heart a million times over.
We soon met with his surgeon who is, to this day, the most amazing man. We put all our faith into him, believing that he could fix our boy.
So at three days old, Lennox went for his first surgery. This was the first stage of his open heart surgery to place a shunt in his heart which would supply blood to his lungs. It’s a day I will never forget.
We made the three days before as perfect as we could. I looked at his chest which I knew would never look like that again, before all the scars and tubes. We kissed him, told him how much we loved him and that he had to come back to us.
The hardest and most agonising eight hours passed before we finally got a call to say that Lennox was back. Lennox was almost hidden under all the wires and tubes with his tiny chest open with a window to his tiny heart. This is something you can never un-see and was really hard to get our heads around.
Lennox soon again hit complications and had another trip to theatre to have his collapsed lung reflated with the hope that it would stabilise him. But it didn't help.
We were then told he would need life-support called ECMO to pass oxygen through his bloodstream. This was so hard to come to terms with and we were almost in denial. I didn't want to think that my baby couldn't survive without this.
Lennox spent seven days on ECMO before being disconnected and then things started to look up. But nothing stayed stable for long. The alarms wouldn't stop I could see his tiny body deteriorating. Then his heart stopped.
No heart rate. Nothing. Lennox had gone.
Everyone swarmed to his bedside within seconds - although time stood still for Jordan and I. We were taken to the parents’ room and I thought that was it. ]
Over half an hour passed and his surgeon, doctor and nurse came to tell us what had happened. They said Lennox didn't respond to chest compression or adrenaline. He had suffered a huge cardiac arrest and was put back on emergency ECMO at his bedside.
We watched his progress over the next week and the decision was made to remove Lennox from ECMO once again.
I was terrified.
Another week passed by and Lennox had yet another operation to hopefully allow him to breathe on his own. But nothing worked. We then discovered that Lennox had a huge bleed on his brain which had been caused by a stroke. A stroke no one knew about.
At this point, Lennox had been sedated and asleep since he was three days old. We needed to see what sort of damage this bleed had caused.
And then this magical thing happened. Lennox opened his eyes. I introduced myself again, I told him that I was his Mammy and that he had to keep fighting.
We’d hit so many walls, but jumped so many hurdles from when Lennox was born, yet he still couldn’t breathe by himself. Following the procedure, Lennox started to have more stable days and finally started to put weight on. He managed to grow out of his tiny sized baby clothes by three months old!
We celebrated Christmas in the PICU, but it was still amazing as all our boys were with us and that was all we ever wanted. Riley and Cole love their baby brother and them being at Scott House has meant that they are able to bond with him. It also makes them feel involved and not like we’re only here for Lennox. Scott House is their ‘get away’ from hospital life too and it's nice for them to see other siblings in the house, it helps them understand that all of this isn't just happening to them and their baby brother.
Once Christmas was out of the way, it was that time again for Lennox to go back into theatre for his second stage of open heart surgery.
Lennox responded extremely well to the surgery and shocked everyone! We finally thought home was in our sights, or at least a ward as Lennox’s whole life had been on PICU.
Before that though, Lennox needed to have his airways examined as during surgery they couldn’t pass the breathing tube through his nose – there was something stopping it from going down.
The examination showed something the doctors at Freeman Hospital had never seen before. He had somehow managed to grow a membrane that completely blocked his upper airway which meant more surgery…And it wasn’t going to be minor surgery either.
This blockage means Lennox is at risk of suffocating and arresting at any time if his tracheostomy blocks or dislodges. Lennox has suffered five cardiac arrests in total - two of which were in one week. His Dad and I though have been there with him during every one, because Lennox is just a two minute walk away from Scott House.
The scariest thing ever, is seeing your baby go through that. No amount of kisses can comfort him. The only ways to help him, the only people that can help him are his doctors and nurses. Because Lennox’s condition is so unstable he can’t go onto a ward just yet. And he needs a nurse by his bedside at all times.
Although Lennox can’t be moved onto the ward – at seven months old we were able to bring him over to Scott House for a visit. I just wanted to show him something normal, like a living room. Even though it’s something so normal to everyone else, it was as whole new experience for him.
Riley and Cole loved it too. They got to play with their brother in a normal way - the same way they would play with each other, but they actually got to involve Lennox and help with putting his dummy in or stroking his head. It was lovely. We will never forget it.
Scott House is where our family is whole. Yes, Lennox can’t stay with us here, but he’s not far from us. It’s a place where I’ve bonded with other parents who were once strangers but are now my best friends. A lot of us mams order cake and chat together on a weekly basis, just helping each other from the day to day to catching up on how everyone's children are doing. Scott House supports us in more ways than any of the staff will ever know.
We are currently on day 302 on PICU and depending on Lennox; we are hoping that he will have further surgery on his throat within the next few months. Lennox has such a little character; he has a constant smile on his face and charms all the nurses with his kisses. He just brightens everyone’s day. For all he has been through, he still makes the best out of a nasty situation. We are prepared to spend his first birthday in hospital - but none of that matters as long as we get him home.
And that is our only goal.
It doesn't matter how long we spend here, what matters is that we all get home together.
Laura-Jane Smith, Lennox’s Mam