When Chloe’s broken heart was mended Part 1: Surgery

With Chloe’s recent first birthday behind us, I have spent many moments lately thinking about her heart surgery.  Wow.  Heart surgery.  A time in my life that was such a blur and if it weren’t for the scars on Chloe’s chest and tummy, I probably wouldn’t even believe it actually happened.

I am so pleased to say that the wonderful surgeon did an amazing job and her heart is working ‘normally’ now.  For the time being, Chloe is having 6 monthly check ups with her cardiologist and this will eventually become yearly.  Unless things change dramatically, it is unlikely Chloe will need further surgery for another 20 – 30 years when a a valve replacement will be required.  This is such an amazing outcome and I feel so blessed to live in an age where babies like Chloe can be saved.

Chloe a few weeks before her surgery and one of the few photos we have of her without the scar on her chest

Prior to birth, Chloe was diagnosed with a Complete Atri-ventricular Septal Defect (AVSD) which is basically two large holes in her heart as well as a faulty valve.  As serious as it is, it is one of the more common heart defects and the problem this caused for Chloe is too much blood was being pumped into her lungs.  Before surgery, you could see Chloe was constantly concentrating on her breathing and she would feed quite slowly because it was far too strenuous for her.  If Chloe did not have this surgery, permanent lung damage would have eventuated which would have been fatal.

Leading up to surgery, we had fortnightly and then weekly appointments with cardiology at PMH to make sure her condition remained stable.  We needed to wait until Chloe reached her goal weight of 4kg before the surgeon would operate and she achieved this target when she was three and a half months old.

All pooped out during one of her many check-ups at the hospital

Two weeks before surgery, Andrew and I took Chloe to PMH for her surgery preparation appointment. She and I both had blood tests and she had her final cardiac echo before the big day. It was a long day for all of us and the reality of her surgery started to hit me hard.

Chloe at her very last appointment before surgery

The hardest part during the lead up to surgery was keeping Chloe healthy and well.  We had to make sure she didn’t pick up an infection of any kind so that surgery could go ahead on the prescribed day.  This meant she was pretty much kept in isolation for the first few months of her life.  We had to keep her away from crowds (especially kids) so no playgroup, parties or trips to the shops and when anyone came to visit, the sanitising hand gel was always nearby.  There was a time when Andrew, Emma and I all got colds so we wore face masks when ever we went near Chloe.  This was very awkward at the time but it just goes to show how well good hygiene practices actually work because Chloe did not get sick at all!  It was hard work but definitely worth the effort.

The week before surgery, one of the wonderful cardiology nurses took me on a tour of the intensive care ward and explained how things would work on the day of surgery and while Chloe recovered in hospital, both in the intensive care and cardiology wards.  She also showed me a picture of a little boy who had just had heart surgery so I wouldn’t get a complete shock when I saw her after the operation. There were tubes and lines everywhere.  I kept looking at Chloe in her pram and I felt so scared and sad that she had to go through this.  I couldn’t imagine all those tubes all over her.  She was so tiny!  The reality of what was going to happen in a week’s time was so difficult for me to comprehend.

After the tour, I met with the surgeon who explained in detail what would be done to Chloe’s heart.  He told me firstly, her heart would be stopped and she would be put on a by-pass machine so the procedure could take place.  He would then patch up the two holes using Chloe’s own tissue from the membrane around her heart and he was also going to put in place some stitches to mend the valve.  He also went through the extensive list of risks associated with this type of surgery.

At this point, ‘risks’ really didn’t mean much to me after I was considered to be ‘low risk’ of having a child with Down syndrome.  I now know all too well that when you are given odds of 1 in 100 or 1 in 1,000 or even 1 in 10,000, these all sound pretty good but at the end of the day, someone always has to be that 1 so it is important to keep an open mind.  As my eyes skimmed the list of these risks (many I didn’t even understand) the surgeon reminded me if Chloe did not have this surgery, she would soon die so the surgery was definitely worth taking all these risks.  So I flipped over the pages of these risks and their odds and signed on the bottom line.

On the 30th of November, 2011, we arrived at the hospital at 7.00am and from the minute we walked into the Admissions office, I cried.  Not the big sobbing kind of cry, just the silent, tears streaming down your face kind.  I just couldn’t stop.  After all the relevant paper work was complete, we moved on to the first waiting room.  Poor little Chloe had to fast before her big operation and she did an amazing job.  We could see she was hungry and uncomfortable but she didn’t cry.  Andrew gently rocked her and rubbed her back which was all the comfort she seemed to need.  After what seemed like forever, we then moved on to the pre-operative bay where Chloe was weighed and changed into a tiny little hospital gown (which was still too big for her!)

We were also reminded again that due to the high demand for the operating theatres at PMH, Chloe’s surgery could still be cancelled even at this late stage.  I really didn’t want that to happen.  I just wanted this to all be over.  We then met with the two anaesthetists who explained what they were going to do for Chloe during her surgery.  Three lines would be put in her body – one in each hand and one in her neck so the 13+ drugs required for this procedure and for her recovery could be administered.

After our meeting we then moved to the corridor outside the theatre rooms where we waited some more.  Tears still streamed down my cheeks at this point and all the emotions I had experienced when I found out about Chloe’s heart condition as well as the Down syndrome came to a head.  At that point, I didn’t care about the Down syndrome and I realised just how much I loved Chloe.  I couldn’t imagine how I would cope if we lost her.  All I wanted was for this surgery to be over so I could have her back in my arms safe and sound.  I don’t even have any photos of Chloe waiting to have her surgery because I was too consumed with my own anxiety.

When Chloe’s name was called, I kissed her and told her how much I loved her and would see her soon.  Only one of us could go in with her and I knew I wasn’t up to watching her be put to sleep, so Andrew carried her through those big glass doors while I stayed outside and balled my eyes out.  Handing over your child for any kind of surgery that requires them to be anaesthetised is hard but as I watched Andrew walk away with her, my mind was drawn to the consent form I had signed the week before – particularly to all the risks that were involved in this delicate surgery.  There was 10% chance of this happening and 5% of that.  I felt sick just thinking about it.  What if something went wrong and Chloe was once again the 1 out of 1000 where the odds worked against her?

Andrew was gone for about 10 minutes and while I sat on my seat and cried, a lovely lady whose teenage son had also just gone in for minor surgery sat down with me.  I told her my baby was having heart surgery and she put her arm around me and sat with me until Andrew came back.  I was so glad to have her there because I didn’t want to be alone.  The kindness of strangers is something that never gets forgotten.

When Andrew returned, he told me they had put a tiny little mask over Chloe’s face which emitted some strawberry scented gas and that she immediately fell asleep as he held her hand.  So 4the anaesthetists could begin their work on her, he was told to leave.

I said goodbye to the kind lady who had sat with me and Andrew and I left the hospital to try and fill the long 6 hours ahead of us.  We went to the Subiaco hotel and had a coffee, followed by lunch and then went off to do some shopping. The Cardiology nurse rang us every hour to give us an update on Chloe’s progress during the surgery and it was with great relief that each phone call was positive and the operation was going as expected without any complications.

Shopping is not one of Andrew’s favourite pastimes and I certainly wasn’t in the mood so for the final hour and a half of surgery we waited at the hospital until finally, the surgery was over.  The surgeon came in to see us and he said Chloe was fine and that everything went “OK”.  I panicked a bit because ‘OK’ is definitely not a word you want to hear when your child has just undergone a 6 hour heart operation.  He said when the surgery was complete, they had trouble getting Chloe’s heart started again and he explained the bottom half of her heart was not doing what it was supposed to.  To correct this, he had put in a temporary pacemaker and if things didn’t improve, the pacemaker would be required permanently.

This upset me greatly and I was again reminded of the risks I had acknowledged prior to surgery.  I vaguely remembered the pacemaker being one of the more common side effects of surgery and this worried me.  Even though the surgeon reassured me having a pacemaker was no big deal after open heart surgery, it was a big deal to me.  Chloe already had Down syndrome and I felt that this was yet another ‘thing’ she would have to worry about in her life.  It bothered me a lot.

The surgeon went on to explain the next few days in Intensive Care would be a roller coaster ride and we should prepare ourselves for the ups and downs Chloe would face as she recovered.  As he left, he said the nurses were still preparing her on her bed  and we would be able to see her shortly.  We thanked him for everything he had done and waited the final 45 minutes (which felt just as long as those 6 hours!) to see our baby girl.  We couldn’t wait!

For part two of Chloe’s heart journey, click here.