Zoe's Heart Story
Thursday 3rd Apr
Tom & I were at our routine 20 week pregnancy
ultrasound, routine… I thought everything would be fine however I was wrong.
The man doing the ultrasound started acting weird, we thought he was having a
bad day. He had left the room saying he had to go check something and came back
with another man. This man looked at the ultrasound and finally he looked at us
and said that it looks like there is a problem with the baby’s heart. I had to
ask him to repeat the name of the defect 3 times before I asked him to write it
down. Our baby had Tetralogy of Fallot. We really didn’t know what that meant
however I don’t think I ever cried so much than that night.
From then our lives had changed dramatically, weekly
appointments at the Royal Women’s Hospital for ultrasounds, CTGs, blood tests
etc. Turned out the baby also was
Intrauterine growth restriction (IUGR) at less than 3rd percentile. This
concerned the doctors a lot more and they actually weren’t confident about
survival.
At this stage we couldn’t keep a secret anymore and wanted
to give our baby an identity, so we announced on Facebook and introduced our
daughter, Zoe and her congenital heart defects and what it meant for us.
So, the appointments continued and I had a planned C section
at 38 weeks at The Royal Women’s Hospital in Melbourne. So many doctors were on
standby including the Royal Children’s Hospital down the road. Tom was ready to
split his time between the 2 hospitals, if that was going to be the outcome. We
were relieved when Zoe was born, she was stable enough to stay at the Royal Women’s
Hospital in their NICU and then moved to their special care unit. Zoe was a
little bigger than they predicted at 5th percentile but she was
still a very sick baby, however we were still able to go home on the 4th
day.
Before Zoe was born, a tour of the Royal Children’s Hospital
was organised so we would be at least a little familiar when we arrived. When
Zoe was a week old, we had our first appointment at the RCH. How lucky are we
to have a wonderful hospital for our kids just down the road. Our weekly
appointments had started and it was discovered that there were a couple more
extra things wrong with Zoe’s heart including having a right sided aortic arch
and MAPCAs with her Tetralogy of Fallot. However, we were lucky that Zoe
continued to grow and really looked like a normal baby with only some minor telltale
signs like bluish lips and blue nail beds. But at 5 months she began to decline
with her oxygen saturations decreasing to 60%. It was time for her open heart
surgery to repair her heart.
The morning of the surgery was surreal, we were ok until we
stood there and watched her being wheeled away, her tiny body on a normal sized
patient bed. We hugged and cried, stood there for a while then stuck to our
plan. Whilst she was in the surgery, we walked down to the Melbourne Zoo to
help pass the few hours, there was nothing we could do sitting in a tiny room
at the hospital waiting, right!? It was actually the best thing we did
especially for our mental health, however after 4 hours we knew it was time to
go back. Waiting for that first phone call felt like it took forever. I took a
deep breath answering that call after 5 hours of surgery time but it was good
news, surgery went well and Zoe was in recovery but we still had to wait
another hour and a half before we could see her.
When we finally walked into the room, she was still in an
induced coma, tubes in her nose, in her stomach, neck & arms, so many leads
coming from her small body and so many different hospital equipment surrounded
her but she looked good as good as a baby could be after just having open heart
surgery.
During those next 6 days while we were in hospital, we were
always grateful to the Royal Children’s Hospital. We are lucky we have amazing
surgeons, specialists, doctors, nurses and so many other support staff. They
have so much to offer in so many different ways.
We got to take Zoe home and she was able to grow like a normal kid and be a
normal kid. She has to still have regular appointments at the Royal Children’s Hospital
for reviews and to monitor her heart. Currently the right side of her heart is
slightly enlarged, her pulmonary artery valve is leaky, mild to moderate and
her aorta is enlarged. But overall things are stable. We hope she doesn’t have
to have surgery again but we are prepared if we have to go down that road.
Zoe’s open heart surgery happened 10 years ago this year. Our
journey started 10 years and 4 months ago. To celebrate this important milestone,
we want to raise money for the Good Friday Appeal which is for the Royal
Children’s Hospital. This hospital is very important to us and to so many other
families. I’m pretty sure that everyone knows a child that had to receive some
kind of treatment at the Royal Children’s Hospital.
So please help Zoe raise money and give back to the Royal Children’s
Hospital to help those families that one day might go through what we went
through or some other pathway.
Please donate to Zoe’s 10 Year Heart Anniversary fundraiser, the link is below.
It’s definitely a very good cause. Thank you for reading this. And Zoe says
thank you.
https://fundraise.goodfridayappeal.com.au/fundraisers/anniechristo/gfa
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