My baby was only three days old when he had an open heart operation.
A few minutes into my pregnancy scan, the sonographer told us to go and get a drink and to come back shortly as she couldn’t get a clear view of the heart.
I think we knew then that something wasn’t right.
Once we returned we were told that the left side of our baby’s heart hadn’t developed properly and that we were being referred to the Foetal Medicine Unit. Quite honestly we felt like our world had crumbled, I can only describe it as abject despair. We were utterly lost and just felt so helpless.
We had to wait two weeks for an appointment for an actual diagnosis but by this point we knew what they would say. Our baby had Hypoplastic Left Heart Syndrome (HLHS), also known as half a working heart, and we had three options: to terminate the pregnancy, to continue with the pregnancy and let nature take its course or to go ahead with the three stages of surgery. I remember feeling so angry that this was a decision we even had to face but it was a no brainer for us, we wanted to give our baby a chance, after all, he’d got this far.
The rest of the pregnancy was hard. We tried to balance being positive but realistic at the same time. I remember something one of the wonderful liaison nurses said that really resonated with me: “Enjoy and be grateful for your beautiful baby for as long as you have him”. I knew then that we would take it a day at a time and love him as fiercely as possible. What more could we do?!
Finlay (meaning fair warrior) was born at full term on 02.08.07 weighing in at a healthy 7lb 8oz. It was a wonderful natural birth and we got to hold him for a blissful few minutes before he was whisked away to Neonatal unit (NNU).
The next day he was transferred to Birmingham Children’s Hospital (BCH) which was fortunately just 15 minutes away. Fin had the Norwood procedure when he was three days old.
Saying goodbye to your child as they are taken to theatre is nothing short of horrendous but we felt reassured that he was in the capable hands of Doctor Brawn. We eventually got the phone call to say all went well and we could finally go to see him. Miraculously we were home with our precious boy just two weeks later.
The next six months were spent enjoying our baby. Fin did well considering all he had been through and everyone completely doted on him. When he was four months old he had a cardiac catheter and the results showed he was ready for the next stage of surgery. He was admitted to hospital for the CP Shunt when he was six months old. Again the surgery went well and we were home within 10 days! This time we finally began to relax! We knew he would need the Fontan Procedure in the future but for now we could be a ‘normal’ family. Fin was a very happy, contented baby and toddler. We had regular check-ups at BCH and pottered along nicely until the time came that he began to struggle more and more. Fin was three and a half when he was admitted for his Fontan. It felt like such a long time since we had all been through this and now we had the added complication of actually explaining to Fin what was going to happen. His dad and I were absolutely dreading it but the thought of him not being blue, being able to run with friends at pre-school and maybe manage a flight of stairs filled us with hope! There was no denying he was struggling, we wanted life to be easier for him but at the same time, thinking of our son enduring open heart surgery and recovery for a third time was just awful.
After his admission date being cancelled numerous times, we finally arrived at BCH on 4th Feb 2011, but this time things didn’t run so smoothly.
As we live locally we hadn’t had parent accommodation previously but this time I was heavily pregnant with Fin’s sister. BCH allowed us to have a room which meant we never had to leave Fin and there was a bed for me when I needed it.
The surgery itself went ok, apart from a heavy bleed from a ruptured aorta so it took longer than expected. A very stressful day! When we went down to Intensive Care (PICU) to see him he didn’t wake up for hours, we were terrified! He eventually came round and the road to recovery began. We were there six weeks in total and in that time Fin had his Fontan, a cardiac catheter, an incident with a chest drain, was put on the MCT diet and featured on the BBC news. Whew!
Following the Fontan, Fin was draining A LOT of pleural fluid. His sats were peaking at a disappointing mid 70s. It felt like it had all been for nothing. Doctor Stumper decided to re cath him. During the procedure he inserted a stent into the left pulmonary artery in order to reduce the pleural effusions.
Things very gradually started to improve until Fin’s dad accidently leant on one of his chest drains – absolute nightmare! He obviously felt awful. Poor thing! (Fin still likes to remind him of this!) Fortunately Fin didn’t have to go back to theatre as part of the drain was still remaining in his lung.
At this point it felt like we would never leave, the Doctor’s thought it was funny to keep reminding me they don’t deliver babies…I was getting closer and closer to my due date!
Finally, totally unexpectedly one of the Doctors said he was happy for the last drain to come out and we could go home! I promptly burst into tears and repeatedly asked: “Are you sure?!” I know compared to some families six weeks is nothing, but we were so happy to know this chapter was over. Ok, we had to go back in a few days later as they thought he needed a drain putting back in, but thank goodness we swerved that one and got to go home…again!
Fin’s baby sister, Kitty, was born six weeks later and Fin finally said goodbye to the MCT diet.
Over the next few months we didn’t really see any improvement in Fin’s colour or activity levels. He had another catheter in the July to reduce the size of his fenestration stent but again, no real improvement.
Fin started school but still struggled with minimal exertion. Therefore he went back to BCH in December for yet another catheter to almost completely close the fenestration. This time we noticed a bigger difference, he found things so much more manageable. It was wonderful, the best Christmas present ever!
Fin is eight and a half now and is doing good. He enjoys school and is performing well in all of his subjects. He has good days and bad days and tends to struggle more during the colder months. It has taken a while for teachers to realise that his condition affects him in so many ways. People tend to think he is cured because you can’t ‘see’ his disability. Not the case: he gets exhausted, particularly near the end of each term, he sometimes suffers with leg pains at night, he finds it hard to concentrate and feels increasingly frustrated when he can’t keep up with playground games. Despite all of this, Fin never lets his condition hold him back. He doesn’t dwell on it and never feels sorry for himself. His teachers admire him and we are always told he is a ‘tryer’! He was recently elected to be on his school council, he got a headteachers award for being an excellent role model and a gold badge for 100% effort! Obviously we are bursting with pride for his determination and tenacity.
As his parents we don’t want his heart condition to define him. First and foremost Fin is a happy, confident, polite and extremely funny little boy. He plays the guitar, is a fantastic mimic and has dance moves that Michael Jackson would’ve envied. He loves Star Wars, going out on his scooter, Liverpool Football Club and family film night….oh and he just so happens to have half a heart!