Tierna’s Story

22nd October 2010 was the day we started on our journey of being Heart Parents.

We were 19 weeks pregnant with our second daughter, already having a beautiful, healthy 2.5 year old.  We didn’t want to find out the gender of our new baby, we like a surprise, so we saw the scan as just another chance to get a look at our developing baby.  I had been nervous in the lead up to the 12 weeks scan, but never considered that the 19 week scan could bring any bad news.  I could already feel the baby kicking, and I was getting big, so we had no reason to worry.  After about 30 minutes of scanning, the sonographer asked us to go for a walk to try to get the baby to move position so she could get some more measurements.  We naively went for a wander round the shops and came back 20 minutes later.  It was then that she told us she couldn’t see all the parts of the heart.  We were stunned.  This was not the result we were expecting.  It was 4pm on a Friday, so there was no further investigation that could be done until the Monday.  We were sent home, not knowing if our baby had a future or not.  The only heart defect we knew of was a “hole”, so we consoled ourselves with the knowledge that an Arsenal player had a hole in his heart!  All the same, I struggled to get out of bed all weekend, and avoided any social situations.  On the Monday we went for a follow-up scan with Dr Greg Kesby, a man we would see a lot more of over the pregnancy.  He was able to diagnose that our baby had Double Outlet Right Ventricle with Transposition, a Ventricular Septal Defect (hole in the heart), and Coarctation of the Aorta.  He reassured us that all these were “plumbing” problems, and fixable.  We were advised to have an amniocentesis, so we had a full picture of what we were dealing with.  We had the amnio right there and then, and were again sent home to await results.  I struggled over the next 2 days to keep it together.  Every time a new piece of the picture came from the amnio, Dr Kesby would phone me to keep me up to date, and every time he caught me asleep!  Luckily everything from the amnio came back clear.  Our next stop was with Dr Stephen Cooper, paediatric cardiologist.  I never even knew such specialisms existed.  He was able to confirm our initial diagnosis, and explain in more detail what this meant.  We were told that our baby would need an operation on Day 1 to correct her coarctation, and Open Heart Surgery on day 7 – the Arterial Switch – to correct her other issues.    The odds of survival were 90%, pretty good most people would say, but to think there is a 1 in 10 chance that your baby will die, it didn’t feel that great at all. Luckily both sides of the heart were looking equal in size.  For the next 18 weeks, we had appointments with Dr Cooper and Dr Kesby to keep an eye on the development of the heart.  This was an emotionally challenging time, and we were very lucky to visit a Psychologist at Westmead to help us talk through our worries for the baby.  I continued to work full time up until 35 weeks, glad of the distraction.

I needed to be induced to ensure the baby was born in a controlled environment at Westmead.  My previous labour had been quick, and before my due date. Westmead was an hour away from home.  Ten days before my due date, I went to Westmead hospital to be induced. After a very quick labour (about 90 minutes), Tierna Cate was born, weighing in at a chubby 3.85kg.  She was born into a room with about 10 medical people eagerly awaiting her arrival.  After a quick cuddle and some photos, she was taken to be stabilised in the special care nursery of the Women’s Hospital.  She was given a prostiglandin drip to keep the duct in her heart open, so the oxygenated and non oxygenated blood could mix.  Her dad stayed with her, leaving me to recover in the labour ward.  As soon as she was stabilised, she was put in the baby transporter, and wheeled down the long corridor from the adult hospital, to the Grace Ward in the Children’s Hospital.  Dr Cooper was waiting for her, to confirm her diagnosis by echo cardiogram.  At this point she was being fed by TPN by a drip, nil by mouth in preparation for surgery.  About 4 hours after Tierna was born, a porter wheeled me down to the Grace Ward, where I was able to hold her.  She was fast asleep, very sweet, and very chunky!

The next day, we signed the consent form, and she was taken off for surgery to repair her coarctation.  This operation went in through her back, under her shoulder blade.  It was a fairly straight forward operation.  Being exhausted from the previous day, I slept through the whole thing.

Tierna came through this very well.  The next 6 days are a bit of a blur – spending time in the Grace Ward holding Tierna, expressing every 3 hours day and night, and recovering physically from giving birth.  On day 7 came d-day – open heart surgery.  Again, we signed the consent forms and handed her over.  The expected length of the operation was 5 hours.  For the first 4 or so hours, I remained fairly calm.  The 5 hour mark came and went, with no news.  Every minute wait after this was agony, wondering what was going on.  Eventually after about 7 hours, we got news that Tierna was coming back to PICU.  The surgeon came to speak to us to let us know how things had gone, but it was hard to make sense of it all – had everything gone to plan?  Was she going to survive?

They hadn’t managed to close her chest, so when we saw her, her chest was open down the middle of the sternum, with a piece of white plastic covering the gap.  It was heart breaking to see our baby like this – her heart beating under the plastic, bloated with excess fluid,  a dozen wires coming out of her.  It was a test of our patience for the next few days, treading water and waiting for her swelling to reduce enough to be able to close her chest.  She was taking back into surgery to clean her wound, but they still couldn’t close her chest.  Finally, on St. Patrick’s day, her original due date, her chest was closed and recovery could begin in earnest.  After a few more days in PICU, she was well enough to move to the Edgar Stevens ward.  Day 16 was a very exciting day, as I was allowed to try breastfeeding.  She latched on like a champ on the second attempt, and refused to be fed any other way from that point onward.  She also started to smile at this time, which sounds ludicrous, but we have photos to prove it!  Tierna came home 3 weeks after being born.  This was very much at the optimistic end of the range we had been told to expect.  Back home, it was just like having any newborn – lots of feeding, nappy changing, settling, but with some diuretics thrown in for good measure.  Soon though, she was off all medication, having tummy time, and all that good stuff.  Under the surface all was not quite so rosy.  A check up with Dr Cooper revealed that the pressure in her heart was too high as the outflow from her right ventricle was severely restricted.  A cardiac catheter procedure was arranged to determine the best course of action.  This revealed her coarctation has reoccurred, so it was ballooned whilst in the cath lab.  After this procedure, Tierna remained tachycardic, so her second open heart surgery was arranged for 5 days later.  This operation removed the tiny pulmonary valve, and added a conduit from her right ventricle to her pulmonary outflow.  This went incredibly smoothly, and she was out of PICU and on the ward within 24 hours,  home 6 days later.  We haven’t looked back since.  Tierna has met all her milestones with a cheeky grin, taking her first steps at 10 months, and now unstoppable!

Tierna will need more OHS in the future, to replace all the bits and bobs in her heart, but for now, you would not be able to pick her apart from any other 13 month old.

We count ourselves lucky everyday – lucky to have a very healthy little girl, and lucky to live in a country like Australia where babies can be diagnosed before birth, and treated for the CHD as and when they need it.

New South Wales