27 Aug 2014

Millie-Mae Burgess Greenwood

Millie-Mae has gone from being born a healthy baby to a very poorly baby with kidney failure. The doctors didn’t hold much hope as she was very young and dialysis on little children and babies was very risky. Millie-Mae was given a 10% chance of making it to her first birthday.

Millie-Mae was a very brave baby. She rarely moaned or made a fuss.  Teething was a doddle after the pain she already felt every night for 12 hours on dialysis and her other two machines, one that fed her, with everything else she had going on; these small normal things were a walk in the park for Millie-Mae. She had various tubes and wires; one for feeding, one into her heart for easy access and her dialysis catheter. She had two to three injections daily into her legs, as well as multiple medications and vitamins. Her blood pressure was taken throughout the day due to high blood pressure. She had a daily fluid allowance that she couldn’t go over of 600ml and no more. She spent almost every night vomiting and laying in her cot, but she still managed to laugh and smile and do some normal baby things all the while battling various infections like peritonitis and septicemia which were a result of infected lines and tubes.

At nine months, Millie-Mae had her kidneys removed because her blood pressure was far too high and her kidneys were already dead. Then at eleven months, Millie-Mae was rushed back into intensive care because she suffered two massive strokes. They also found a hole in her heart, aortic stenosis and leaking valves, as well as a blood clotting disorder (Lupus Anticoagulant) due to the pressure of dialysis on her little body. She spent a long time on life support and we were again told it was unlikely she would come through and if she did make it there would be some serious brain damage. But, once again, Millie-Mae battled on!  Unable to sit up unaided, feed or even play, Millie went on for another two years on dialysis and she spent her first three Christmases and birthdays in hospital unable to walk- she hopped around on her knees like a little frog.

Eventually, when Millie-Mae was big enough, she had a kidney transplant with a kidney donated by Dad. All went pretty well, although there were a few slight glitches but compared to what she had been through, we didn’t mind and they were pretty much expected.

Millie-Mae is now doing great. She’s in mainstream primary school and walks with a frame; she’s a happy child. She still takes a lot of medications some of which have very serious side effects and cause a lot of other awful illnesses and problems long term and she’s also a regular at the hospital. Millie-Mae understands that she will eventually need another kidney. But, is also very aware of the people that helped her and the research needed for stories like this to be successful. Sadly not all are.  Millie-Mae has attended the British Transplant Games for a number of years and took part in the Games this year winning a Bronze Medal in Table Tennis and is really looking forward to Bolton 2014.