Feature member story: a gift for Chloe
Best friends ... sisters Chloe and Jess.
Essential Baby forum administrator Therese is mum to Chloe and Jess. In National Blood Donor Week 2012, July 28 to August 3, she shares why the gift of blood donation means so much to her family.
Earlier this year we booked an interstate holiday. We chose the dates and the girls planned to snorkel at the Great Barrier Reef. It’s probably not a big deal for most people, but I get quite emotional when I think that a few years earlier we could never have considered booking a holiday like that.
We couldn’t plan to go anywhere as we didn’t know if she would be well enough. Parks, the shops, movies - they were all out of the question
Back then, we always had to be ready for a last minute hospital admission, and never knew if our youngest daughter would be well enough to fly. Our holidays used to be quick trips within three hours of home. Planning anything was impossible.
Visit donateblood.com.au to learn more.
The reason we are able to do so much these days? Because of the wonderful gift of blood donations.
Chloe was born in 2003, and was sick from a very early age. She had constant chest and sinus infections. Each infection seemed to last longer than the previous one, but she was our second child and she had a sister at preschool, so we just thought that was the reason why. Then ear infections were added to the mix, and as she got older it became clear that she just wasn’t fighting infections like she should.
Our paediatrician suspected an immune deficiency, and after some testing we learnt that that’s what Chloe had. She was 21 months old. Her particular immune deficiency means her body doesn’t create antibodies to things, so there’s nothing there to fight the infections as she gets them.
Chloe seemed to take longer and longer to recover from infections. For months, no matter what we did, she just stayed sick. Her growth really slowed down and she was exhausted all of the time. She spent a lot of time resting or sleeping.
We couldn’t plan to go anywhere as we didn’t know if she would be well enough. Parks, the shops, movies - they were all out of the question as she would become sick after being there.
Then the doctors realised that in the process of all of these infections she had sustained permanent lung damage.
Chloe started being admitted to hospital for IV antibiotics. Because of the damage to her lungs and the severity of the infections she would spend two weeks on a drip getting two or more antibiotics that would hold the infection at bay. We would then go home, and be back in hospital within two or three weeks. It was a good patch of our lives when it was four weeks between admissions.
Long hospital stays are hard on everyone. We all hated seeing Chloe so sick, and hated that our family was in two places for two weeks of nearly every month. Greg had to balance work and looking after Jess. Jess had to go off to school every morning without seeing me or her sister. Then straight after school she and Greg would go to the hospital, which is 30 minutes from where we live, to see us. It was exhausting.
Of course, those admissions were even harder for Chloe. She was stuck in a small room with me for two weeks at a time; her sister, who is her best friend, was only seeing her for small parts of each day. She missed having her dad around at bed time. She missed her pets. And as anyone who’s been in hospital knows, you don’t get much sleep. She was exhausted and scared. She had to undergo many traumatic medical procedures.
In between admissions we tried our hardest to stop Chloe getting infections. We weren’t seeing a lot of people and weren’t going anywhere, as it was too risky. We all knew that each new infection meant a long hospital stay. Chloe regularly had pneumonia or bronchitis.
When she was five and a half we got some wonderful news: Chloe had been approved for infusions of intravenous immunoglobulin (IVIG). IVIG is a blood product, made from the plasma component of blood. It’s essentially other people’s antibodies.
These infusions give Chloe the antibodies she needs to fight infections; it gives her an immune system. It only last a few weeks, so every four weeks she has to go into hospital for the day to have another infusion.
In the beginning Chloe was receiving three small bottles of IVIG each infusion.This has increased as she’s grown, and will continue to change as she gets older. They’re the antibodies from hundreds of blood donors. IVIG is worth more than gold per gram, and for us it’s priceless.
To say these infusions have changed our life is really an understatement. Chloe has energy now: she can run, ride her bike and walk our puppy. We can go to parks. We can plan holidays. We can go to concerts. We can do so many things that a few years ago we couldn’t even consider.
Our family has been changed because of the generosity of blood donors. Once a month Chloe gets a lifesaving and life changing gift, and without that I’m not sure where we’d be.
The gift of blood donation is an amazing one. It’s selfless and it changes lives. The four of us are so grateful – blood donors gave our little girl the chance to lead a little girl’s life, and blood donors gave us back our family life. We never take that generosity for granted.
Learn about blood donation on the Australian Red Cross Blood Service website at donateblood.com.au.
Got a message for Therese and her family? Have your say in the Essential Baby forum, or comment below.