Patient Stories - Deon

Carina and husband Riaan found out at the 20-week scan that their baby might not survive the pregnancy. But Deon, now 3, is a fighter. Carina describes the family’s journey and the part Keech played from the start.

As parents already to our beautiful little girl, Mia, my husband Riaan and I were absolutely thrilled when our second child came along. But, at my 20-week scan, our whole world came crashing down: our tiny boy had a serious heart condition and might not even make it through the pregnancy.

Deon’s condition means the left side of his heart is very under-developed so the right side needs to work harder to pump the blood around his body.

He had his first open-heart surgery at just four days old, his second at 10 weeks. Both operations went well but Deon spent five months in hospital, being rushed to the children’s intensive care unit time and time again. It was terrifying for us as a family.

Then everything changed again – barely a few months old and Deon had a stroke. It affected the right side of his brain, which controls the left side of the body. He walks with a slight limp on one side and he only uses his left arm to balance himself.

Keech helps at home

From the very beginning, the amazing team at Keech Hospice Care has been there for us, starting with one of Keech’s specialist nurses, Judith, who’s been part of our family life since before Deon was born. She visited us during the pregnancy, in hospital and at home, and gave us so much support when we didn’t know what to think or do. If it wasn’t for Judith and Keech, I don’t know if we’d have got this far.

When Deon was finally well enough to leave hospital, it was a really tough time for us. We had a three-year-old and a seriously ill baby who needed medication five times through the day and night, and was fed through a tube every three hours, 24/7.

Mia’s amazing

His sister Mia is amazing at helping us keep Deon as healthy as possible. She understands Deon can become poorly very quickly so she, too, watches out for any signs his heart might be failing, even when they’re playing together. When she comes in from school, she always washes her hands straightaway. How many five-year-olds would do that?

All those little things that seem normal to most families can mean the difference between life and death in our house. Deon picks up bugs easily, which is a nightmare because Mia brings all sorts home from school. But there’s nothing we can do about it – she has to go to school.

For the first year of Deon’s life, Riaan and I barely left the house because we were so worried about him contracting an infection. We had to take his feeding pump and bag everywhere along with all his medication. It was too much so we just stayed home.

I can completely understand how some couples don’t stay together through something like this. It’s hard to stay positive with the pressure it puts on both of us but we just want to give both our children the best life possible.

Fun splashing around

In 2017, we started going to Keech’s Tots ‘n’ Toys sessions on Thursday morning at the hospice. We also used the hydrotherapy pool for a family swim – Deon has so much fun splashing his arms and legs around. He can’t go to normal swimming pools because they’re too cold and he could easily catch an infection. Keech’s pool is perfect because it has a higher temperature than normal pools.

Tots ‘n’ Toys has been a lifesaver! It gives me the chance to get out of the house and socialise – you can have time to yourself without worrying because there are trained people watching out for him. It allows Deon to play in a safe environment and meet other children. Many of the children there have low immunity to infection so everyone’s in the same situation.

It’s done his confidence the world of good, too – he’s coming out of his shell and making friends. He also likes his music sessions with Nathan, the music therapist – it’s the only time he sits still!

For me, letting anyone else care for Deon has been difficult because only Riaan and I know all the signs and symptoms to look out for. But I know I need to relinquish control and leave him with someone else, for both our sakes. It’s hard to put that level of responsibility on another person. But I can at Keech.

Deon is due another heart surgery around the age of four and I know Keech Hospice Care will be there for us once again.

We’re in a better place now and I don’t think any of it would have been possible without Keech’s support. The care we’ve received – at home, in the hospital and at the hospice – has been amazing.

You can help us continue making the difference when it matters the most to families like Deon’s by making a donation today or by calling 01582 707940 (Mon-Fri, 9am-5pm).
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