Finn Benson Smith's Story as told my Mum Lana Smith
After a normal pregnancy and 6 & 12 week scans we found out at our 19 week morphology scan that something was wrong with our baby’s heart.
We then waited a week and a half for our appointment at Westmead Children’s Hospital. This was the first time we had ever been there and it was a scary and daunting experience – not knowing what was wrong with our baby. The scan was an easy one for him and our baby was diagnosed with Tetralogy of Fallot. We were given a diagram of a normal heart and then a diagram of what the baby’s heart roughly looked like. This was a great piece of information that I kept and still look back on, amazed that they could pick up such detail from a quick 5 minute scan.
As we live on the NSW Central Coast all my care was moved to Westmead Hospital and I attended a high risk clinic on a fortnightly basis. It was great to be able to see our baby grow at the ultrasound in each visit and while it was difficult to fathom what was ahead of us on this journey, it was always reassuring to see the baby moving around.
Due to our location I needed to stay down closer to the hospital for 2 weeks prior to the birth and as my husband (then partner) was still working, my mum and I stayed in an Air BnB unit in Northmead and we were only 5 minutes from the hospital which worked out great. I look back on that experience very fondly.
When the baby – now Finn – was born he was officially diagnosed with Tetralogy of Fallot with absent pulmonary valve and 4 major aortopulmonary collateral arteries (MAPCAs). These MAPCAs turned out to be a blessing as they kept him alive and healthy – his oxygen sats were always in the high 90s and sometimes 100 and he was almost totally asymptomatic. Our paediatrician has called him the most low maintenance case of ToF he has ever dealt with.
On 13 October 2015 Finn had a cardiac catheterization procedure to close off these MAPCAs at Westmead Children’s Hospital. He was 15 months old. There was talk of closing his MAPCAs during his inevitable OHS but it was decided that this was the best option. It turned out to be a good decision because the procedure went for about 5 hours as they had quite a bit of difficulty locating the particular arteries. It is always concerning when your child is under anaesthetic but we were reassured when one of the anaesthetists kept walking past us in the waiting area saying ‘All is fine…. They’re just looking for more arteries’. When they’re comfortable leaving him I’m happy!! In the end they were only able to close three of his four MAPCAs as one was located quite far down in his body and there were two people capable of closing it off – one was in Orange and one was overseas at the time. So we just kept that one open as it wasn’t causing any issues.
At 20 months old on 24 February 2016 Finn underwent his full repair, his big open heart surgery. While it was great he had been so healthy it was also difficult in some ways as we never knew when he would start to deteriorate and require the surgery. Ever since birth we had always been told ‘4 to 6 months he will need it’ and then ‘after his first birthday’ and then ‘after he’s 18 months’. We were hesitant to book things we couldn’t cancel JUST in case we had to have surgery. To receive an actual surgery date was a relief – it just so happened to be 6 weeks before our wedding. All my anxiety leading up to the date was that it was going to be postponed. They tell you that the three main reasons a surgery is postponed are:
- An emergency comes in and requires the team
- There are no ICU beds available for post op
- The child is sick
I was able to control one of those things (sort of!). And so for 5 weeks prior to the surgery date we had Finn in a quarantine of sorts. He had very very limited contact with other children and only went to our parents houses, in conjunction with our house. I like to think that this prevented him getting any illnesses that would have derailed our perfect plans!
Fortunately the surgery went ahead exactly as planned and at 8:15am on that hot Wednesday morning I kissed his little head and left him in the capable hands of Professor David Winlaw & his team. At 12:30pm we were paged to say he was out of surgery so that was a big relief!
The plan was to remove his pulmonary artery and replace it with a donor artery but the donor artery was too large and the surgeon didn’t want to make unnecessary cuts into his good tissue to make it fit. His anatomy was ‘friendly’ and they were able to fashion a temporary pulmonary artery using existing materials. I can’t believe how clever these people are.
His recovery went well and at 12:30pm on Wednesday 2 March (exactly one week after coming out of surgery) we walked out the doors of Westmead Children’s Hospital and have had no issues since. He will require future surgery, at least one more operation – initially it was thought he would have another OHS about 5 or 6 years old to put in an actual pulmonary valve and then one in his early teens to have an adult one put in; however at our 6 months post op cardiologist appointment we saw really good results on the echo and Finn might make it to his teens without another surgery. Here’s hoping!!
Having your baby diagnosed with a potentially fatal illness, particularly in your first pregnancy at age 26, is definitely something I wouldn’t wish on anyone. Particularly as we have no cardiac issues on either side of our families – this was definitely a surprise! Fortunately we have such a great support network of family and friends who have helped us so much along the way.
I hadn’t heard about HeartKids before our prenantal diagnosis so it was great to read up about the services they provided when we were first undertaking this new role of future parents of a Heart Kid. When we were presented with our parent care pack in the Grace Centre for Newborn Care, and then given our Heart Beads and explained what that initiative was, I found myself feeling so emotional. The fact that someone had come up with such a wonderful way to express the journey our child has been on and will continue to travel truly touched me.
The day we were moved out of high dependency into Edgar Stephens Ward was a particularly difficult day for me. I was so happy we were out of the NICU and into the ward but it was a hard day emotionally for me. He moved earlier than we had been told and so I didn’t have any clothes ready to stay with him on the ward. I was very upset and not emotionally ready to leave Dean and stay with my baby. We were travelling to the hospital and back every day (about 2.5-3 hour commute daily) and that had taken a physical strain on us too. HeartKids chose that day to pay us a visit and I see that as a great sign – I needed someone to talk to that day and express how I was feeling and just having someone sit with us on the ward and explain their journey and how we could tackle ours was great.
We are very fortunate that we haven’t had to use the services of HeartKids to a great extent but just knowing there is an organisation there ready and willing to help us is wonderful and we are very grateful.
I have tried to give back as much as I can – in 2015 I travelled to Sydney and sold merchandise for Sweetheart Day and I also assisted in the set up for the Tiny Ticker’s Ball at the Westin Sydney later that year. My background is hospitality and events so I felt comfortable helping out with that! My family and friends also joined the ‘Two Feet & a Heartbeat’ walk at Lake Macquarie and that was a great day.
A NOTE FROM THE HEARTKIDS TEAM:
Finn now has a younger brother, Gray William Smith was born on 17 June, 2017! We are so grateful to Lana for sharing so much of her beautiful family's story.