When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….

I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.

Saturday, April 30, 2011

Off to Melbourne to see Veronika's Paed Cardiac Surgeon

The last almost 3 years have gone so fast, but in particular the last 6 months. For those of you that have joined on our journey hear is a quick run down of Veronika's Cardiac Journey.....

 Veronika on the 14th May, 2008, her Birth Day

  • Veronika was diagnosed with Down Syndrome at birth. 1 in 4 babies born with Down Syndrome have a Congenital Heart Defect, so Veronika had her heart checked.
  • Veronika was diagnosed with a Congenital Heart Defect a couple of hours after she was born. We were told it wasn't really anything that we needed to worry about.
  • The next day she had a echo cardiogram, which showed she had a 8mm hole in her heart called an ASD. We were told that she would need open heart surgery in the near future, depending on how well or unwell, she was. I told the Doctor in NICU that he said the day before that it was nothing to worry about, and he did apologise!
  • We were refered to the Cardiac clinic in Hobart, where Cardiologists from Royal Children's Hospital Melbourne come to see our precious little ones
  • We were seen every 3 months when they came to Hobart
  • There are 2 Cardiologist that come to Hobart, 1 thought Veronika should have her heart repaired, and the other wanted to 'wait and see'
  • Last winter Veronika suffered recuring bouts of Pneumonia, around every 4-5 weeks. So it was decided that we should take Veronika to Melbourne to meet the Paed Cardiac Catheter Surgeon for him to decide what to do
  • In July we saw him. He agreed Veronika needed the repair done, he said there was no medical evidence to support that she had pneumonia so often because of her ASD, but thought it was best to repair it. He said the wall of her heart was like Swiss cheese, and had many holes over a 18mm space, the largest hole being 13mm. He said there was good news and bad news, the bad the waiting list was 2 years, and the good, he would put her at the top and operate in around 3 months.
  • We went home very happy with his decision. 
  • Veronika became really sick a couple days after returning home, and this was the 1st time I have actually thought we would loose her
  • Veronika surgery was scheduled and re scheduled because of her pneumonia, they wont operate for 8 weeks after respiratory infection. We went early November and had 8 hours of pre admission, we were told to come around 11am the following day as she was on the afternoon list. Then a hour later we had a call from one of the surgeons. The head surgeon was reviewing Veronika's cardioecho and the largest hole now appeared to be around 5 mm, and the whole defect was about 9mm(i think from memory). He said he wanted to see us in the morning. 
  • He told us he had never seen a hole as big as Veronika had only a few months before, close up so much in such a short amount of time. He didn't want to operate, unless we insisted that he do(of course we didn't want him to, the side effects/risks of heart surgery are enough to say no even when its needed!) and to come back in 6 months for a review.

 Waiting for blood tests as part of Veronika's pre admission last November

 Veronika at the HeartKids Christmas Party last year.

The last 6 months has flown by, and we are going to Melbourne tomorrow for Veronika's appointment on Monday. I am confident it will be all good news, as Veronika has been really well lately, apart from the occasional blue hands and feet. And she is finally growing....

Oh and don't forget to buy you tickets for the Veronika Will Walk Gala Events.....you can even buy them online at www.veronikawillwalk.org and we will post them to you....

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