When a baby is born, as a mother, you just know that you would lay down your life to protect them. When they hurt, you hurt, when they are happy, you celebrate with them. When you see them struggling, you’ll do anything you can to give them a leg up. That’s why I’m here, why I’m donating blood, why I am telling you our story.
When Ivy and her twin brother Noah were born at 30 weeks gestation, I had already been a recipient of blood. Four units to be precise. Our first son was born and died eighteen months prior to their birth and that blood allowed me to get out of bed and travel down to Westmead Children’s Hospital to be with him. It essentially saved my life and gave me a second chance.
Ivy and Noah were small but healthy when they came into the world. They spent nine weeks in total in the NICU, first at John Hunter and then at Maitland hospital. They had normal issues of kids who were born a little too soon.
During their first Winter we danced with illness a lot and we started to notice that Ivy would take a long time to recover, where as Noah would bounce back, the following Winter was worse. Ivy would have febrile convulsions and become septic. Her ear would always be infected, despite medical and surgical intervention. She started to lose weight and sleep a lot. She would also cry constantly.
We expected things to get better over the Summer but instead they became worse with an auto immune disease, that would cause Ivy’s back, legs and sacral area, her hands and her mouth to blister. Along with this was the constant illness. Hospitalisation was becoming a part of our every day life. A five day stay would buy her a few weeks before it would all start again. We could not do anything or take Ivy anywhere because the chances that she would pick up an illness were high. A quick trip to the supermarket, for food, resulted in a week long stay in hospital with mycoplasma pneumonia.
At the end of 2007 and the beginning of 2008 I had to resign from work because I was exhausted looking after a sick baby, a family and juggling shift work. David was suddenly the only one bringing in an income and the pressure to hold down his position at work and balance family commitments was very stressful. The other children’s after school activities were put on hold, often they were juggled between our parents, while David went to work and I stayed with Ivy in the hospital. Ivy’s illness was quite literally tearing us all apart. When we were at home Ivy was miserable and sick, never really getting to a point where she was wholly well and this added huge strain to our family.
After a long journey, Ivy was tested and came up positive for an immune deficiency and we went to see an immunologist. We had exhausted all of our options and so it was suggested that Ivy begin a monthly infusion of Intragam P, also known as Intra Venous Immuno Globulin therapy.
Our application was made and denied twice before a final appeal allowed Ivy a six month trial of the medication. She had her first infusion in September 2008 and continues to this day.
At the beginning of treatment Ivy had had four pneumonias, countless ear infections, at least four counts of blood sepsis, all of which were life threatening illnesses. The IVIG has stopped alot of this.
Ivy has long term complications from her chronic illness. Problems with her heart and her lungs but the IVIG has slowed these dramatically also.
IVIG is a blood product.
Plasma spun from whole blood and direct plasma donations of over 300 people per vial of this medication, allows our daughter a second chance at living as normal and healthy life as possible. It is in high demand and supply is low, so we consider ourselves very lucky to be able to receive this infusion for Ivy.
The IVIG is essentially other people’s antibodies, which are infused into Ivy so that her body can mount a response to infection.
It has changed her life, changed all of our lives.
This year, Ivy started preschool and her energy levels are almost as good as her brother’s.
She smiles and laughs and dances and draws. She runs and plays. All things that she had little interest in before the IVIG. She prefers those to sleep. She is just like any other three and a half year old. For David and I, the difference has been amazing. We have our cheeky girl back.
At the beginning of the year, David and I decided to donate blood on a regular basis, so we could give back some of what we have received. It’s not just a blood product that Ivy gets, it’s life and it means the world to us.
As a blood donor, I hope Ivy’s story encourages you. Donating blood can make such a big difference for someone like our girl. It’s not just the individual either, it affects the whole family. Our older children have gone back to their activities, Noah has his playmate back. Work and family are more balanced now.
As a Mum, I want to thank everyone who donates, who gives selflessly so that my baby and many others can have another chance. For me, that is an amazing gift.
