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In times like these, you need the support of your family. You can’t do it alone.

News   •   Jan 02, 2018 16:46 GMT

Ivy is just started walking and is an energtic toddler.

When I was just 27 weeks pregnant, I found out that my unborn daughter Ivy had a hole in her heart. I was devastated.

We live in Malta, and when Ivy was born it was a joyful but very scary occasion. Her Dad, Steve, and I were told that she would need to be flown 1,806 miles away from home to Great Ormond Street Hospital (GOSH) in London, England. Although we knew our daughter would be born with a heart condition, we hadn’t fully prepared ourselves for the stress and worry that we would endure.

When she was six days old, we arrived at GOSH for Ivy’s first operation where they discovered that she had a narrowing of the aorta too. So the priority was to deal with that first, which meant they couldn’t close the hole in her heart as it would be far too much for her little body to cope with. We had to fly back to Malta and spend the next three months waiting for her next procedure.

We made the most of that time together at home, but in the back of our minds the worry was always there. It always lingered. We feared for our daughter’s health and panicked that we may not be able to find affordable accommodation in London. We didn’t want to be far from her side, just in case anything bad did happen.

The worry was that if we couldn’t find anywhere to stay, Steve would have to fly back to Malta which would’ve broken his heart. And the thought of us being separated terrified me. I didn’t know if I’d be able to cope with it all on my own.

Thankfully, on the day of Ivy’s heart operation we spoke to a lady called Elizabeth from the GOSH accommodation services and she told us about The Sick Children’s Trust. We soon received a phone call to say a room would be available for us the following day and we could move in. I can’t tell you how much of a relief this was. We could stay together, as a family.

Because of The Sick Children’s Trust and its ‘Home from Home’ Rainbow House we were nowhere near as stressed as we had previously been. We were only ever a few minutes’ walk away from our daughter and the accommodation was given to us free of charge which was simply amazing, considering hotel prices were adding up to £1,500 for a week-long stay.

And although Ivy’s open heart surgery went well, she did fall ill which meant we were at GOSH for a month. I can’t begin to imagine what we would’ve done without Rainbow House. We wouldn’t have been able to afford to stay in a hotel for a week, let alone a month. And we wouldn’t have been able to stay together as a family. In times like these, you need the support of your family. You can’t do it alone.

A year on, Ivy is doing really well. Although she seems to be stable, we don’t know if she will need any follow up operations for her aorta. Because of her condition, Ivy is also at a higher risk of aneurysms which means she has to have an echocardiogram every six months to monitor it. Thankfully these scans are done in Malta and if anything shows up it will be passed to GOSH. Though, as brilliant as GOSH were, we never want to go back.

Ivy has started walking and is an energetic toddler who loves playing outside, especially with our boxer dog Lola. Ivy is so in love with her dog that her first word was ‘Lola’!

Our daughter also started nursery earlier this year which was terrifying for me. Before she started I kept thinking of all the ‘what if's’. I made sure the nursery knew all about her condition and still remain a little worried but I'm so glad she's started. I love seeing the picture updates, her playing with other children and she's learning so much! It’s become clear that Ivy is a budding artist. All her arts and crafts are dotted about the house and are so treasured. At one point we didn’t think she’d get as far as nursery, so this has been a huge step for us as a family.

Zoe Zarb, Ivy’s Mum

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